According to the presentation, CFS is severe fatigue that persists for at least six months and results in a significant decrease in activity. The fatigue occurs in combination with at least 4 of the following symptoms on a regular basis: joint pain, impaired memory and/or concentration, enlarged lymph nodes in the neck, unrefreshing sleep, sore throat, muscle pains, and headaches.  CFS is a diagnosis of exclusion, which means that other causes of symptoms need to be ruled out, such as an underactive thyroid gland, before a diagnosis can be made.

As soon as I read this info, the first thought that went through my mind was how similar the CFS symptoms seemed to how I would feel if I had to go back to eating gluten again.  Joint pains, “brain fog,” fatigue, and enlarged lymph nodes were all chronic problems which I experienced in the months before my Celiac diagnosis.

The educational activity included 3 case reports of real patients with chronic fatigue syndrome. The third report described a 52 year old woman with Chronic Fatigue Syndrome. She was previously healthy, but developed fatigue and chronic pain following a trip to Asia.  She did have a past medical history of depression, high blood pressure, and environmental allergies.  Her physical exam was normal outside of having some fibromyalgia trigger points (these are areas of the body which are tender when palpated).  The patient had low Vitamin D levels, but her thyroid function, iron levels, and autoimmune screening tests were normal. She was started on Vitamin D supplements and began psychological therapy, with minimal improvement in her chronic fatigue symptoms.  Since her Vitamin D levels remained low, despite supplementation, she was tested for Celiac Disease.  She did have Celiac Disease, and she had an almost total resolution of her symptoms of CFS within 6 weeks of going gluten free.

The bottom line is that you or a loved one have been diagnosed with chronic fatigue syndrome, please make sure that Celiac Disease has been excluded.  I tried to search the medical literature for information linking CFS with non-celiac gluten sensitivity, but in usual fashion, there has been no research looking for a link between the two problems.

References

“A Case Based Approach to Chronic Fatigue Syndrome.” Power Point presentation moderated by Anthony Komaroff, MD, Professor of Medicine, Harvard Medical School. Released April 19, 2013 on http://www.medscape.org/viewarticle/782106?src=wnl_cme_revw.

Centers for Disease Control. Chronic Fatigue Syndrome (CFS). Accessed 5/12/2013. http://www.cdc.gov/cfs/index.html.

Chronic fatigue syndrome: oxidative stress and dietary modifications. Logan AC, Wong C. Altern Med Rev. 2001 Oct;6 (5):450-9.

1. Cry. Be angry. Complain. Mourn the loss of gluten from your life. You will never be able to eat pasta, pizza, chocolate chip cookies, or drink beer again. Feel sorry for yourself. Cry and yell some more. Get it all out, emotionally, at the beginning. FYI, I was so angry and in denial at first that I ate a whole sleeve of Thin Mint Girl Scout cookies and then cheesy pizza bread sticks within a 24 hour period right after my testing was complete…the effects on my body were so horrible, that I was able to then go gluten free and never look back (I just wish that I been smarter about choosing my last gluten-containing foods).

2. Learn about which foods contain gluten. There is a great list on the Living Without Magazine website (see link). Remember that you can never eat any of the following again: wheat (einkorn, durum, faro, graham, kamut, semolina, or spelt), rye, barley, triticale, malt, malt flavoring, and malt vinegar. Get used to reading ingredient labels and calling companies to inquire about gluten in foods and products. Two of my favorite lists come from the page www.withstyleandgraceblog.com:

3. Purge your kitchen, bathroom, and medicine cabinet of gluten. You will give away/throw away more than you could ever imagine.  Gluten Free Makeup Gal’s website can help with cosmetics and www.glutenfreedrugs.com can help you to find out if gluten is lurking in your medications.

4. Get copies of your Celiac tests (antibodies, genes, pathology results). Read through them, learn from them, and share them with your family members who may need to be tested.

5. Find reliable sources about Celiac Disease and sign up for internet newsletters, Facebook pages, etc. My two favorites are the National Foundaton for Celiac Disease Awareness (www.celiaccentral.org) and the University of Chicago Celiac Disease Center (www.cureceliacdisease.org).

6. Do not give in to the urge to replace all of the foods you threw away (pastas, breads, salad dressings, etc.) with gluten free versions. Try one or two gluten free products out a week, as many of these foods are very expensive, may not taste good, and contain a lot of sugar and empty calories. Focus on eating a lot of whole foods (fruits, veggies, lean meats, fish, potatoes, etc) in the first few months if you can.

7. Explore shopping for GF foods online, as you may be able to save quite a bit of money. I’ve been able to order flours and mixes, i.e. Bob’s Red Mill, for almost 50% off what I would have paid at my local grocer.

8. Find a few “go-to” meals and snacks for when you are time pressed but need to be able to safely eat, i.e. Larabars and KIND bars.

9. Find a support group, whether it be it a local group or online. I just joined a fabulous one that was started by Chrissy from “Glam Without Gluten” (see link).

10. Discuss whether or not you need supplements with your doctor or practioner. A lot of us are anemic and/or Vitamin B12 deficient in the beginning. It is important for us to have our Vitamin D levels and our thyroid function monitored. There is emerging information on the role of altered gut flora (bacteria) in inflammation of the digestive system, so you may want to consider a probiotic as well (see my post on probiotics for more details).

11. Encourage your family members to get tested. First degree family members (parents, siblings, and children) have a 1 in 22 risk of also having Celiac Disease. Second degree family members (aunts, uncle, grandparents) have a 1 in 39 risk.

12. Expect a change in how you socialize. Gone are the days when you can freely eat and drink whatever you’d like at every party, potluck, wedding, etc. Some people will go out of their way to accommodate you, and others won’t. Some will care about your diagnosis, and others won’t (and it will be difficult to predict who will care and who won’t). You will feel “left out” at least some of the time. Get used to bringing your own food and snacks wherever you go. I always bring a GF item to every social gathering I attend, so that I am assured that there will be one food that is safe for me to eat.

13. Take care of your body. Run, walk, do yoga, meditate. Use your diagnosis as an opportunity to take charge not only of your diet, but your overall well-being. Once I was gluten free, I was able to run again after years of not having the endurance to run more than 2 miles.

14. Cry. Be angry. Complain. There will be good and bad days at first, but with time, the good days will outnumber the bad. It will get easier, I promise!

One of my favorite reminders to take care of myself:

The thyroid gland is a butterfly-shaped gland that is present in the neck region, just under the region of the “Adam’s apple,” which is made up of two lobes (see diagram).

Our thyroid glands secrete hormones that regulate metabolism, play a role in the growth and development of our bones and muscles, and impact brain and heart function. Thyroid gland dysfunction can lead to a rapid decline in health. Prior to my diagnosis with Hashimoto’s Disease, I had a 4 to 6 month history of overwhelming fatigue, dry skin, puffiness around my eyes, hair thinning, mental sluggishness, and feeling cold all of the time. I was about to scan and put in a photo of myself in the weeks leading up to my diagnosis, but I look so atrocious that I did not want to scare any of you. It is available upon request!

In Hashimoto’s Disease, the body makes auto-antibodies which lead to thyroid inflammation and destruction, which in turn causes the the thyroid to be under-active (also called hypothyroidism). Hashimoto’s is the most common autoimmune thyroid disease that is associated with Celiac Disease. Common symptoms associated with hypothyroidism include lethargy, depression, muscle cramps, constipation, dry skin, cold intolerance, and/or weight gain. The treatment for hypothyroidism is to take synthetic thyroid hormone, which is called levothyroxine. The brand name for levothyroxine is Synthyroid.

If you are started on levothyroxine, it is important to have your thyroid hormone levels checked frequently, so that your dose can be adjusted as needed. Pregnancy, the postpartum period, lactation, menopause, and other events associated with hormonal changes can also effect the thyroid gland, so it is important to have your thyroid hormone levels monitored closely during these times.

Once I went gluten free, my levothyroxine dose decreased from 150 mcg/day to 125 mcg/day. From the reading that I have done, this is not unusual, and many Celiacs experience a need for less thyroid hormone once off of gluten. However, it is very unusual for hypothyroidism to ever totally resolve. This means that if you are diagnosed with Hashimoto’s Disease, you should anticipate being on thyroid hormone replacement therapy for the rest of your life.

A few other things which I have learned about levothyroxine: 1. Make sure to take it on an empty stomach (I take mine first thing in the morning, about 30 to 45 minutes before breakfast), 2. To take separately from vitamin and mineral supplements, as some can interfere with its absorption, and 3. Make sure that the levothyroxine which you are taking is gluten free.  I have been taking generic levothyroxine manufactured by Lannett since October 2012 without any issues. www.glutenfreedrugs.com is a great resource to check out the GF status of drugs and supplements.

Grave’s Disease is the most common cause of hyperthyroidism, or overactive thyroid. In this disease, auto-antibodies stimulate the thyroid gland to produce an excess of hormones. Hyperthyroid symptoms are the opposite of those seen in Hashimoto’s Disease and include weight loss, elevated body temperature, irritability, tremors, heart palpitations, and insomnia. Treatment options for Grave’s Disease include antithyroid medications, radioactive iodine, and surgery. For more on Grave’s Disease, please see the following link (taken from the womenshealth.gov website).

The main test used to screen for thyroid problems and monitor thyroid function is called a TSH (short for thyroid stimulating hormone). In hypothyroidism, the TSH is too high, and in hyperthyroidism, the TSH is too low. In most cases test results should be available within 24 hours of having blood drawn. T4 and T3 levels are also monitored closely during diagnosis and treatment.

My hypothyroid symptoms improved dramatically within one week of starting on Synthroid after my diagnosis with Hashimoto’s Disease. I urge you to have your TSH checked if you or a loved one are experiencing any unusual symptoms which may be due to thyroid dysfunction.

The bottom line is that if you have Celiac Disease, you need to have your thyroid function monitored, and if you have autoimmune thyroid disease, you should strongly consider being screened for Celiac Disease, especially if any concerning symptoms develop.

For more information, please check out the following links:

1. Celiac Disease and Autoimmune Thyroid Disease. Ch’ng, C., et al. Clin Med Res. 2007; 5(3): 184-192.

2. “Celiac Disease, Thyroid Disease Often Found Together. Two Autoimmune Disorders Could Share Common Trigger.” By Jane Anderson, About.com Guide; updated January 19, 2012.

3. “Celiac and the Thyroid.” NFCA website: www.celiaccentral.org. Accessed 04/23/2013.

4. Prevalence of thyroid disorders in untreated adult celiac disease patients and effect of gluten withdrawal: an Italian multicenter study. Sategna-Guidetti C, Volta U, Ciacci C, Usai P, Carlino A, De Franceschi L, Camera A, Pelli A, Brossa C. Am J Gastroenterol. 2001 Mar;96(3):751-7. See link.

The main blood tests to screen for Celiac Disease are tissue transglutaminase IgA (TTG IgA) antibodies and endomysial IgA (EMA IgA) antibodies. These tests are highly sensitive, which means that if the tests are negative, Celiac Disease can be ruled out most of the time. The problem with using these tests in infants and toddlers is that the sensitivity of these tests is much lower for children under the age of 2 than it is for older children and adults. Some believe that this is because young children with Celiac Disease have not had enough time to develop TTG and EMA IgA antibodies which can be measured. Needless to day, there are probably many toddlers with Celiac Disease who are walking around undiagnosed because they did not have elevated TTG and/or EMA IgA antibodies when they were tested.

Deamidated gliadin peptides (DGPs) are a new test for antibodies against gliadin and are being used with increased frequency for screening for Celiac Disease in the U.S. and Europe. A group of Italian researchers recently studied the utility of using DGP IgG antibodies to screen for Celiac Disease in children under the age of 2. They found that 100% of children under the age of 2 with biopsy-proven Celiac Disease had abnormally high DGP IgG antibodies on blood testing. They also found that DGP antibodies were abnormally high in 4 toddlers who had malabsorption (diarrhea) but who did not have a biopsy consistent with Celiac Disease. One of the 4 children with an abnormal DGP did have mild villous blunting and eventually developed Celiac Disease. The other 3 children with diarrhea and elevated DGPs all had the genes that predispose to Celiac Disease. They plan to follow these 3 children closely for the development of Celiac Disease. The researchers also found that DGP levels correlate very well with the extent of damage on the duodenal biopsies of the children with Celiac Disease and postulate that in the future, children with markedly elevated DGP antibodies may not need to be biopsied for diagnosis with Celiac Disease.

Out of curiosity, I went to the internet sites of some of the major labs that perform Celiac Disease blood screening tests. Labs which DO include DGP IgG antibodies on their celiac panels include Prometheus, Labcorp, ARUP, and Mayo Medical Labs. Labs which DO NOT include DGP IgG antibodies on their celiac panels include Kimball Genetics and Quest Diagnostics (as of 4/17/2013).

If you suspect that your young child may have Celiac Disease, but he or she did not have positive antibodies, it may be helpful to find out which lab their blood was sent to so that you can learn whether or not DGP IgG antibodies were part of the testing.  I recommend that you discuss any concerns with your child’s physician.

References:

1. Antibodies to deamidated gliadin peptides: an accurate predictor of celiac disease in infancy. Amarri, S., et al. J Clin Immunol. Published online 4/5/2013.

2. ARUP Consult. A Physician’s Guide to Laboratory Test Selection and Test Interpretation. Celiac Disease. www.arupconsult.com/assets/print/CeliacDisease.pdf.

3. Screening for celiac disease in average-risk and high-risk populations. Aggarwal, S., Lebwohl, B, and Green, P. Therap Adv Gastroenterol. Jan 2012; 5 (1): 37-47.

FPIES is a severe food sensitivity/intolerance which causes digestive symptoms in infants. Although it is considered by many to be an “allergy,’” it does not involve the formation of IgE antibodies like other food allergies. The most common triggers for FPIES in babies are cow’s milk and soy proteins, although rice, oats, barley, fruits, and vegetables have also been documented as triggers for older infants who have been started on solid foods. Based on recent studies it is believed that 0.3% of infants have an FPIES reaction to cow’s milk. This is in addition to the 3-5% of infants who have milder non-IgE reactions (allergies) to cow’s milk protein during the first year of life.

Infants with FPIES have symptoms shortly after consuming cow’s milk and/or soy proteins, usually within 1-4 hours. The usual trigger is a cow’s milk based formula, but breast fed infants can react to milk proteins in their mother’s breast milk as well. Symptoms can include projectile vomiting, chronic diarrhea with blood and/or mucus, low blood pressure, lethargy, irritability, and/or an elevated white blood cell count. 50% of infants with FPIES who react to milk will also react to soy.

It has recently been recognized that older infants can develop FPIES after solid foods are introduced during the 2nd six months of life. Rice is the most common trigger, followed by oats, barley, chicken, turkey, egg whites, green peas, peanuts, and potatoes. I recently learned that 80% of infants with one solid food trigger will have reactions to at least one other food, and that it is common for infants to have FPIES reactions to multiple foods.

Diagnosing FPIES is difficult because there are currently no blood tests that can be used in detection. This is because the immune reaction of FPIES does not involve the formation of IgE antibodies against the offending foods. This is much different than the IgE-mediated immune reaction that occurs in older children with food allergies. IgE allergies can be detected by blood and/or skin testing.  If a baby has adverse reactions after multiple exposures to the same food, FPIES can be diagnosed clinically. If the diagnosis is unclear, an oral food challenge (OFC) should be performed. It is recommended that an OFC be performed under close medical supervision (i.e. doctor’s office), as there is a risk for low blood pressure and/or dehydration to develop during a food challenge. In the worst cases an infant can develop shock. In some cases infants may need IV fluids after a reaction. Steroids are sometimes needed in severe cases. Based on what I have read, it seems that reactions to trigger foods may get more severe with time, i.e. it may take less and less of the offending food to trigger a reaction.

Research has shown that FPIES to milk and/or soy protein resolves by 3 years of age. It is recommended that children with FPIES get oral food challenges every 12 to 24 months. My oldest daughter is now 7 years old and she has no problems with dairy products (she eats yogurt, cheese, and ice cream) but she has refused to drink plain cow’s milk and has a tendency to avoid soy as well.

Reading and learning about FPIES led me to have many questions and concerns:

1. Why are so many infants born with this problem and why is it increasing in severity? Is it somehow related to their moms having undiagnosed Celiac Disease, and/or some other process causing “leaky gut” while pregnant?

2.  Is this the same disease process which those of us who have multiple food intolerances are experiencing, only babies are getting sicker and having more severe reactions since their immune and digestive systems are less mature?

3. How under-diagnosed is this problem? I had never heard of it 7 years ago when my daughter had it (and I was in my pediatric residency at the time). What are the real numbers?

4. Do infants with FPIES go on to develop Celiac Disease or gluten sensitivity when they are older? Is FPIES, even though it resolves, some sort of marker for the future development of food issues in a patient?

5. Is this somehow linked to the dramatic increase in autism over the last few years? Do the FPIES episodes have some sort of effect on the developing brain of an infant?

6. Does the microflora of the gut play a role? Would probiotics prevent and/or ameliorate the problem?

7. I was going to speculate a bit about GMOs, but I am not sure that I am ready to write about that yet…

I suspect that we are going to hear a lot more about this problem in the future. I wrote this article to share the little which I know about FPIES with you, in hopes that we can learn about it together.

References:

1. American Academy of Allergy, Asthma, and Immunology website: www.acaai.org/allergist/allergies/Types/food-allergies/Pages/food-protein-induced-enterocolitis-syndrome-fpies.aspx

2. Medscape Pediatrics. “FPIES: The ‘Other” Food Allergy.” Dr. Anna Nowak-Wegrzyn, MD. Published online April 3, 2013.

3. Curr Opin Pediatr. 2012 Dec;24(6):739-45. Clinical diagnosis and management of food protein-induced enterocolitis syndrome. Leonard, S. and Nowak-Wegrzyn, A. www.ncbi.nlm.nih.gov/pubmed/23042254

4. Clin Exp Allergy. 2012 Aug;42(8):1257-65. A multicentre retrospective study of 66 Italian children with food protein-induced enterocolitis syndrome: different management for different phenotypes. Sopo, S., et al. Department of Pediatrics, University of Sacred Heart Agostino Gemelli Rome, Rome, Italy. www.ncbi.nlm.nih.gov/pubmed/22805473

When I finished my lunch I grabbed my phone to check my emails. The first 3 emails I read were the following:

1. An invitation to a spaghetti and garlic bread benefit dinner for a local homeless shelter.

2. A reminder that my upcoming book club is at a cheesecake restaurant (I have been there many times and there is nothing on the menu I can eat and no “carry ins” allowed).

3. A local running club invitation to an upcoming ”flatbread and beer” 5K fun run.

This string of emails was a quick wake-up call that those of us with Celiac Disease (1% of the population) are a small minority, that we truly live in a food-based culture, and a reminder that I used to take similar social events totally for granted back when I could attend them.

I fortunately, just this week, came across a recipe for socca bread, a French, chickpea flour-based flatbread which is similar to Italian farinata.  It is gluten free, dairy free, cheap, easy to make, and tastes great. I found the recipe on the website www.thekitchn.com. I used the oven method to make it, as I am ashamed to admit that I do not own a cast iron skllet, and I used Bob’s Red Mill Garbanzo Bean Flour. I am not ashamed to admit that I ate the entire flatbread in less than a day!

Ingredients

1 cup (4 1/2 ounces) chickpea flour
1 cup (8 ounces) water
1 1/2 tablespoons extra-virgin olive oil, plus more for the pan
1/2 teaspoon salt
Optional seasonings: 1 tablespoon chopped fresh herbs (rosemary, thyme, oregano), 1-2 cloves minced garlic, 1/8-1/2 teaspoon spice (chili powder, cumin, smoked paprika, za’atar)

Equipment

10-inch cast-iron skillet, pie tin, or other metal baking dish
Spatula
Knife

Instructions

Makes 1 thick 10″ pancake or 2 thin 10″ pancakes (recipe can be multiplied)

1. Prepare the Chickpea Batter – Whisk together the chickpea flour, water, olive oil, and salt in a small bowl. Let rest for 1/2 hour to 2 hours to give the flour time to absorb the water.

2. Heat the Broiler and the Pan – Set an oven rack six inches below your oven’s broiler and turn on the broiler. Set a cast iron skillet or other baking dish on the rack to warm for five minutes.

3. Pour the Batter – Remove the skillet from the oven using oven mitts. Add a teaspoon or so of olive oil and swirl to coat the bottom of the pan. Whisk the chickpea batter quickly and then pour half into the hot skillet (or all if making a thicker pancake). Tilt the pan so the batter coats the entire surface of the pan.

4. Broil the Socca – Broil for 3 to 5 minutes, until you see the top of the socca begin to blister and brown. If you find the top browning before the batter is fully set, move the skillet to a lower oven rack until done. The socca should be fairly flexible in the middle but crispy on the edges.

5. Slice and Serve – Use a spatula to work your way under the socca and ease it from the pan. Slice it into wedges or squares, sprinkle with salt and pepper, and drizzle with a little good olive oil. Repeat with any remaining batter.

Socca is best if eaten immediately after baking while still warm, but can be refrigerated and re-toasted for up to a week.

Additional Notes:

• To Bake in the Oven: Heat the oven to 450°F and pre-heat the baking dish for 5 minutes. Bake the socca for 8-10 minutes, until it’s cooked through, then run it under the broiler to blister the top.

• To Bake on the Stove Top: Film a pan with oil and set over medium-high heat. Pour in the socca batter. After about 3 minutes when the edges are firm, gently lift the pancake and flip it. Cook on the other side for another 2 to 3 minutes, until both surfaces are dry and beginning to brown.

I plan on making socca often, and sharing it with many. I may even have my own socca bread party so that I can actually socialize and eat at the same time. I hope you enjoy it as much as I did.

Disclaimer: The socca bread which I made looked nowhere near as pretty as the socca bread photo which I found on www.wholeliving.com. Their website also has a few different recipes and suggestions for socca bread preparation.

I have been trying to search for answers as to why so many of us with Celiac Disease also have multiple food intolerances. With our villous blunting and poorly functioning small intestines before diagnosis, it makes physiologic sense to have a temporary lactose intolerance. I had severe lactose intolerance when I was first diagnosed with Celiac Disease and was unable to tolerate dairy until I had been gluten free for at least 6 months. I can now tolerate a moderate amount of dairy without the development of GI symptoms. However, since being diagnosed with Celiac Disease in 2010, I have developed intolerances to both soy protein (after one year of being GF) and sulfites (right around my two year anniversary of being GF). When I ingest soy proteins or sulfites I have immediate digestive distress followed by a “delayed” onset of inflammatory symptoms about 24 hours later.

Recent research has shown that I.B.S. patients often have multiple food intolerances, of which wheat is one of the most common. A group of Italian researchers published a paper last fall that highlighted that many patients with “wheat sensitive” I.B.S. have other food intolerances, the most common of which are dairy, tomatoes, eggs, and chocolate. I did write a bit about this last December in a post which I titled, “What Now, Wheat Sensitivity?”  The original research article by Carrocchio, et al. can be found here.

Although I used to think of I.B.S. as being a “diagnosis of exclusion,” I have confirmed with the University of Chicago Celiac Disease Center, as well as two other gastroenterologists, that it is possible to have both Celiac Disease and I.B.S. With my development of multiple food intolerances and “super sensitivity” to traces of gluten, I believe that I may have both Celiac Disease and “wheat sensitive” I.B.S. Through my online interactions with many other Celiacs, I am pretty sure that I am not alone in this either. Due to the plethora of information regarding Celiac Disease on the internet, we are fortunate to be able to read and learn a lot about the treatment for Celiac Disease (which, as we know, is the gluten free diet). We have much less information about what to do about I.B.S. symptoms. In my case, I was totally in the dark as to the fact that I probably still have I.B.S., as I figured that all of my gut problems and symptoms were from untreated Celiac Disease.  However, in reading up on I.B.S. for this article, I have learned that April is I.B.S. Awareness month.  There is also a huge online IBS support forum which can be found at www.ibsgroup.org.

In brief, I.B.S. is a chronic condition of the digestive system of which the most common symptoms are abdominal pain and diarrhea and/or constipation. It is estimated that 10-20% of the U.S. population, at any given time, meets criteria for having I.B.S. Although the exact cause of I.B.S. is unclear, current theories include that it involves having a “spastic” colon, a history of a previous GI infection, food intolerance(s), stress, and/or overactive nerves in the GI tract. Current treatments for I.B.S. include dietary changes, psychological therapies, and medications, including antispasmodic drugs, antidepressants, and anti-diarrheal therapies.

The low FODMAPs diet (fermentable oligosaccharides, disaccharides, monosaccharides, and polyols) is one of the most popular nutritional treatments for I.B.S. The underlying theory is that an alteration in small intestinal gut flora leads to the fermentation of short chain carbohydrate components (FODMAPs) in the large intestine. Fermentation by colonic bacteria causes adverse symptoms such as gas, abdominal pain, diarrhea, and constipation which can lead to I.B.S.

FODMAPs include the following: fructans (found in wheat, rye, onion, garlic, artichokes, asparagus, and chocolate), fructose (found in honey, fruits, high fructose corn syrup), galactans (beans, lentils, and legumes, such as soy), polyols (found in apples, apricots, cherries, nectarines, peaches, pears, prunes, watermelon, blackberries, avocados, mushrooms, and artificial sweeteners, such as mannitol, soribtol, and xylitol), and lactose (dairy).

For more on the low FODMAPS diet, please refer to the Stanford Digestive Health Center Nutrition Services website.

At this point my GI symptoms are under control on a gluten free, soy free, sulfite light, and “modified” paleo diet, so I am not going to adopt a strict low FODMAPs diet, nor any other I.B.S. treatments, unless I develop symptoms that warrant it. However, reviewing I.B.S. has reminded me that my periodic episodes of digestive discomfort may actually be due to I.B.S. symptoms as opposed to “glutenings.” I spent a lot of time during my first year after diagnosis trying to figure out why I kept getting “glutened” by GF foods, such as soy flour, Gatorade, lentils, and cranberries. Looking back, I was likely having I.B.S. type symptoms from FODMAPs. Also, it is entirely possible that the GI discomfort that I experience from ingredients such as xanthan gum and carrageenan may be due to I.B.S. as well (as opposed to Celiac Disease).

A dual diagnosis of I.B.S. and Celiac Disease may well explain why many of us have multiple food intolerances, symptoms of leaky gut, and/or better responses to probiotics than others with Celiac Disease. Is I.B.S. a manifestation of an innate immune response to both gluten and other food proteins in some of us with Celiac Disease? Is it I.B.S. that actually causes a leaky gut in some of us or is it a leaky gut which causes I.B.S. symptoms? I hope that we will someday have answers. In the meantime, I hope that we can all find the best diets for our individual needs and intolerances without having to go too crazy or jumping through too many hoops.

Happy Spring to all of you!

My friend and I shared a fabulous meal and as I drove home I reflected on how grateful I am for my family, friends, faith, health, and the foods and beverages that I can (and do) eat and drink.

Here is my list of foods I am thankful I can eat (in no particular order):

• fruits (apples, berries, clementines, grapes, peaches, melons) • vegetables (kale, spinach, sweet peas, tomatoes, eggplant, zucchini) • chocolate • eggs (and bacon) • fish, shrimp, and non-processed seafood • fresh squeezed lemonade • aged cheese • meats such as chicken, pork, lamb, and lean beef • sweet potatoes, squash, and yams • Jelly Bellies • homemade chocolate, cranberry scones (adapted from this fabulous recipe) • popcorn and kettle corn • Against the Grain baguettes • green, leafy salads • all types of nuts (as long as ordered from nuts.com) • GF oats and oatmeal • gelato • corn tortillas and many Mexican foods • organic wine • chickpeas, rice, and other beans • fresh herbs like basil, cilantro, and rosemary • GF Thin Mint cookies from Happy Bellies Bake Shop

I will leave you with the Shin Buddhist Food Prayer (in Japanese and English):

Before meals recite: Ita Da Ki Masu. I take this nourishment in gratitude (to all beings).

After meals recite: Go Chi So Sama. Thank you in deepest gratitude (to sustain my life).

Thank you for reading! What foods are you thankful to be able to eat?

Despite my reluctance, I am grateful that I gave this other support group a chance. The guest speaker was a Gastroenterologist who is also board-certified in Integrative Medicine, so he seemed to have a true understanding of the effect of nutrition on our bodies’ healing.  He presented top notch information on Celiac Diease, and as he spoke I scribbled notes on a manila folder. Upon reviewing my chicken scratching, the phrase “Potential Celiac Disease” jumped out at me because it is a term that I have heard of but did not know much about.

Potential Celiac Disease (PCD) is diagnosed when a patient has abnormally elevated TTG IgA and Endomysial (EMA) antibodies on blood screening tests (the 2 main celiac antibodies) but normal bowel mucosa on biopsy. There is no evidence of the villous blunting seen in Celiac Diease (CD).  PCD often pops up when people who are at high risk for celiac disease are screened, such as first degree relatives of Celiacs, Type 1 diabetics, and/or patients with other autoimmune diseases. Many patients with PCD have no symptoms and do not feel ill from eating gluten. It is essential for the Celiac screening to be done while a patient is still on a gluten-containing diet. If a person is already gluten free when tested it is difficult to tell if the positive celiac antibodies and normal biopsies are from PCD v. full blown CD which is already being treated.

There is a lot of controversy over what to do if a patient is diagnosed with PCD. Some experts believe that if Celiac antibodies are elevated, that one should go gluten free, even in the absence of symptoms. Others believe that asymptomatic potential Celiacs should continue on a gluten containing diet, with close monitoring and follow-up of with small bowel biopsies at regular intervals. The rational behind this 2nd line of thought is that a lot of patients with PCD may never actually go on to develop full CD.

Unfortunately, Potential Celiac Disease has been so under-researched that we really don’t have good information on what percentage of “Potential” Celiacs become actual Celiacs.

A group of researchers in Italy recently studied 47 patients who were diagnosed with PCD. They found that those with PCD did not differ from those with CD in terms of age of diagnosis, digestive symptoms, anemia, or other associated problems. They broke the 47 PCD patients into 2 groups for analysis:

Group 1: 23 patients who immediately went gluten free after being diagnosed with PCD, most due to digestive and other autoimmune complaints. Follow-up biopsies to screen for CD could not be performed since all of these patients were GF.

Group 2: 24 patients who stayed on a gluten-containing diet after being diagnosed with PCD. 14 had repeat biopsies at 1 year. Of these 14, 5 had villous blunting (full celiac disease) and 9 did not. Of the 9 who had normal biopsies at 1 year follow-up, 4 went GF due to symptom development and 5 remained without symptoms and had normal biopsies 3 years later.  The 10 patients with potential celiac disease who remained on a gluten-containing diet and refused follow-up biopsies are described as being in “good clinical condition,” however 5/10 had anemia, 3/10 had thyroid disease, 3/10 had diarrhea, 1/10 had alopecia, and 1/10 had rheumatoid arthritis on follow-up. While these problems might be perceived as being better than having full blown Celiac Disease, I wonder if so many symptoms would be present in this group of potential Celiacs had they gone GF.

The concept of non celiac gluten sensitivity was largely ignored in this paper. There is also no comment on how many intestinal biopsies were taken. The speaker that I listened to last night reiterated that at least 4-6 biopsies need to be taken from the duodenum in order to confirm a diagnosis of CD. If less than 4-6 biopsies are taken, CD can be missed.

In summary, we are in a gray zone as to how to advise others with “potential” celiac disease in terms of the gluten free diet. If one has PCD and feels lousy after eating gluten, then the decision to go gluten free is an easy one. For those who have PCD but do not have any ill effects from eating gluten (at least outward symptoms), I can see how the decision may be quite a bit more difficult.

After living so long with undiagnosed Celiac Disease, I would be hard pressed to not recommend the gluten free diet for those with Potential Celiac Disease. We currently have no idea how high the real risk of Celiac Disease is for this group. I personally know that it is a risk that I would not want my own family members to take….whether or not they would take my advice is an entirely different question!

Reference:

Prevalence and natural history of potential celiac disease in adult patients. Federico Biagi, Lucia Trotta, Claudia Alfano, Davide Balduzzi, et al. Scandanavian Journal of Gastroenterology. Posted online on March 19, 2013. (doi:10.3109/00365521.2013.777470)

*Also, a quick reminder that this is a blog. I am summarizing medical literature, but also adding in my own thoughts and opinions on what I have read. I am not trying to tell anyone what they should do for their own health, nor am I giving medical advice through this page. Thank you!

I have encountered tons of women, both professionally and personally, who have struggled to get pregnant and/or carry a pregnancy to term. Recent estimates have shown that up to 10.9% of women of childbearing age (15-44) in the U.S. seek treatment for infertility in any given year. I wrote a post about the effects of Celiac Disease on pregnancy in January 2013, and since then have read quite a bit more about topic. Here are some things which I have learned about Celiac Disease and infertility:

-Studies published within the last two years have shown that between 6 and 10% of women with unexplained infertility have (undiagnosed) Celiac Disease. Previously, it was believed that the numbers were much lower, around 2-4%.

-Many women with Celiac-related infertility do have a prior history of irritable bowel syndrome or other GI complaints, but they do not necessarily have these symptoms while undergoing treatment for infertility.  It is well known that signs and symptoms of Celiac Disease can appear and then disappear for years (and even decades) before diagnosis.

-It is believed that Celiac impacts fertility due to a combination of malnutrition (nutrient deficiencies interfere with sex hormone function) and the formation of small placental blood clots (thromboses) due to Vitamin B12 deficiency. It has also been shown that anti-TTG antibodies do bind to placental tissues and can interfere with placental formation and function.

-If a woman has infertility due to Celiac Disease, fertility should resume between 3 to 9 months after going gluten free.

-Many researchers conclude that all women with unexplained infertility should be screened for Celiac Disease. Based on discussions with several people, this does not seem to be happening in all parts of the U.S.

The average cost for one cycle of IVF is $12,400. Many women go through multiple rounds of IVF before conceiving. Surrogacy can cost up to $100,000. If the research studies are correct, many women who are paying for these expensive treatments may actually have undiagnosed Celiac Disease. We need to continue to inform and discuss this with our families, friends, and neighbors as so many are potentially impacted.

General infertility statistics are found on the CDC site: http://www.cdc.gov/nchs/fastats/fertile.htm.

Other references which may be of interest:

1. Undiagnosed celiac disease in women with infertility. Machado AP, Silva LR, Zausner B, Oliveira Jde A, Diniz DR, de Oliveira J. J Reprod Med. 2013 Jan-Feb; 58(1-2):61-6

2. Increased prevalence of celiac disease in patients with unexplained infertility in the United States. Choi JM, Lebwohl B, Wang J, Lee SK, Murray JA, Sauer MV, Green PH. J Reprod Med. 2011 May-Jun; 56(5-6):199-203.

3. Immediate effect on fertility of a gluten-free diet in women with untreated coeliac disease. Raffaella Nenna, Maurizio Mennini, Laura Petrarca, Margherita Bonamico. Gut 2011;60:1023-1024.

4. Anti-tissue transglutaminase antibodies from celiac patients are responsible for trophoblast damage via apoptosis in vitro. Di Simone N, Silano M, Castellani R, Di Nicuolo F, D’Alessio MC, Franceschi F, Tritarelli A, Leone AM, Tersigni C, Gasbarrini G, Silveri NG, Caruso A, Gasbarrini A. Am J Gastroenterol. 2010 Oct; 105(10):2254-61.

5. Infertility Treatment in a Population-Based Sample: 2004–2005. Sara E. Simonsen, Laurie Baksh, Joseph B. Stanford. Maternal and Child Health Journal. May 2012, Volume 16, Issue 4, pp 877-886.