Sure Foods Living - gluten-free and allergen-free living

Q. In one of your previous responses you mention that polycystic ovarian syndrome (PCOS) and celiac are related. I was diagnosed with PCOS for over 20 years and treated with BCPs and then Metformin. Meanwhile I’d suffered terrible bloating, chronically, for years, encompassing both lower and upper abdomen. I began to learn gluten may cause the bloating and PCOS symptoms, so I went off gluten and the meds simultaneously (without any clinical testing). I have had periods like clockwork since, and the bloating is greatly improved.

My questions are:

1. Without the classic celiac symptoms and diagnosis, is this most likely celiac or gluten intolerance (or do you think they are always one and the same)?
2. Why do people suggest that celiac be considered for “unexplained infertility,” as opposed to for all women experiencing infertility and other symptoms of reproductive hormone imbalance? (Similarly, now UWisconsin health clinics test all women with osteoporosis for celiac, not just those with “unexplained” osteoporosis.) So many doctors will just say, “oh, that’s PCOS,” therefore “explaining” it without really understanding it as gluten for so many of us. They have their “explanation,” ergo, no need to test for gluten! Talk about a “tip of the iceberg”? One practitioner states that over 80% of her patients with PCOS test positive for gluten issues. Is this a percentage you would expect to find in a well-designed formal study? If so, wouldn’t that be roughly 5% of women having gluten issues just from that symptom complex alone?

Thank you for any time you may find to address my questions. Unfortunately there appears
to be scant clinically sound information or studies concerning this.

A. To answer your questions:

1. Textbook celiac disease only accounts for about half of all those who cannot tolerate gluten. There are a number of genes beside the HLA genes that are associated with gluten intolerance.  Unfortunately, we do not know precisely their contribution to gluten intolerance. Thus, they are not one in the same as we cannot trace all gluten intolerance to the consequences of untreated celiac disease.
2. The second question can be answered by understanding that CD4 cells activated at the gut level by gluten can travel through the bloodstream to the brain where they can influence the secretion of hypothalmic releasing factors that influence pituitary trophic hormones and lead to infertility.  In addition, these activated CD4 cells also home to the endometrium, and can create local inflammation that can interfere with the implantation of a fertilized ovum.

Hope this helps.

Health and happiness,
Dr. Aron

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Q. What needs to be done or watched for once living gluten free, 4 years in my case, with nothing more than an occasionally accidental ingestion of some gluten?  Are there any tests that we should have, assuming everything else appears to be fine?

A. If you are well, then an occasional accidental gluten exposure is safe. Each individual has an unique reaction to gluten depending upon their genetics, the bacterial and viral environment of their gut,and many other factors.  To check for inadvertent gluten exposure, get an IgA anti tTG test.

Health and happiness,
Dr. Aron

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Q. Could symptoms labeled as Burning Mouth Syndrome be caused by gluten intolerance?  These symptoms have been constant for 5 2/3 years and include pain in roof of mouth, tongue, cheeks and under the tongue at all times except when eating. Additionally during the night I have pain above the roof of the mouth and into one ear and down the throat.

I have had nightly GERD for 8 years that doesn’t respond to any medications,  thyroiditis and nodules and increased vascularity in the thyroid, sometimes a fine tremor in my hands, and involuntary movement of my tongue and extremities. I also have had post nasal drip and phlegm for 25+ years which doesn’t respond to any medication nor was it improved by surgery to correct a deviated septum (which my doctor said left me with “perfect sinuses”.)

I know the thyroid symptoms may improve if gluten-free but are any of the other symptoms likely to be improved?

A. Sores or aphthous ulcers and taste disorders are common in celiac disease, as is reflux esophagitis, and thyroiditis.  You must get tested for celiac disease, and you must have a thorough investigation into your reflux, with endoscopy biopsy and manometry studies.You may contact my office at www.gut-check.com.

Health and happiness,
Dr. Aron

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Q. I just had a blood test to test for genetic predisposition to celiac because my mother is a celiac and I have a lot of the same symptoms. It came back negative and I am just wondering if it is possible to still have it. My doctor has completely ruled it out based on the test. Have you any idea what percentage of celiacs have no genetic markers?

A. The genetic tests for HLA DQ2 and HLA DQ8 account for 95% of celiacs. Celiac disease itself by the classical definition (positive anti tTG and EMA antibodies and a Marsh III biopsy) only accounts for half of all patients who are sensitive to gluten. There are a number of genes that are not currently tested for in clinical practice that have been associated with gluten sensitivity.  We currently are ignorant of their precise actions. You probably would benefit from a gluten-free diet.

Health and happiness,
Dr. Aron

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Q. I am a bakery manager. Last month I tested positive on the celiac blood tests. My father has been diagnosed with celiac, has both genes associated with the disease, as well as lactose and soy allergies now. I have had diarrhea for about a year and a half. My CBC didn’t show much to worry about but I was a little low on vitamin D, not dangerously so, just none stored up.

In my bakery I don’t actually work with the flour, but the bakery is an open environment. We also have  a cake decorating area and a coffee bar, where I generally work, about 30-90 feet away from the dough prep area. Is it possible that I will still be able to continue working in the facility as long as I wash my hands frequently, wear a mask when I am within 5 feet of dough prep area?

I am very concerned because I have been in the bakery industry my entire adult life, it is what I know. I started when I was 18 am now 39. The first 16 years were spent in a bakery that worked with frozen dough the one I currently manage is a full scale mostly scratch bakery. My plan was to see how an exclusive gluten free diet worked and if that did not change my symptoms and reduce my numbers then I would HAVE to consider a career change. However the more I read the more fearful I become that it is inevitable that I will have to change my job.

Do you have any advice or similar case examples you may be willing to share?

A. You need to get a biopsy, to assess the extent of your celiac disease: the more advanced the biopsy, the greater need to protect yourself. Gloves and a mask are a good idea.  There is some data on how much gluten will injure a celiac patient, but that data was generated in stable celiacs who have a normal biopsy, and may not apply to your case. I have had two patients who had minimal , and I mean MINIMAL gluten exposure and became symptomatic.  One was a waitress who was exposed to serving bread, buns, toast, pancakes, etc. She even could tell if someone switched the scoop from wheat to her grain bins at Whole Foods. Another patient would get sick just walking near a bakery!!!!

Health and happiness,
Dr. Aron

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Q. Last year I had a test to see if I had Celiac Disease. The test came back negative. When I eat things like bread and chicken nuggets or cereal etc. I end up with nausea and headache and feel really bad. Could the test have been wrong or am I just sensitive to gluten? Eating has become a real problem!

A. Many of the commercial lab tests for celiac disease are only about 40% sensitive. Ask your doctor to order a Celia-Plus test from Prometheus labs. If those are negative (they include genetic testing) you could still be sensitive to gluten: celiac disease only accounts for about 50% of those sensitive to gluten.  We know of at least 6 other genes that are involved in gluten sensitivity, but we don’t know how they are involved. The bottom line is: if gluten bothers you, see a dietician, and go on a gluten-free diet. It’s healthy and harmless, and is getting easier to follow every day.

Health and happiness,
Dr. Aron

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Q. I noticed your answer to a question about celiac disease that its onset could be caused by abdominal surgery. How is this possible? How often does it happen? I have just recently started seeing a homeopathic MD and one of the tests showed a borderline gluten allergy and thyroid imbalance. All of my symptoms have worsened through 2 pregnancies that resulted in post partum induced thyroidism and an ectopic that ruptured requiring surgery. Your comment about surgery causing celiac disease is interesting. Thank you for any info you can share.

A. Many with latent celiac disease will have activation of the disease after any abdominal surgical procedure; the mechanism is obscure, but is thought to be a result of an intense inflammatory response to the operation.  Non-celiac mimicking conditions such as the Irritable Bowel Syndrome are similarly activated.

Health and happiness,
Dr. Aron

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Q. I have had polycystic ovarian syndrome (PCOS) for several years and luckily, though various fertility treatments, was able to conceive and give birth to two beautiful boys (ages 5 and 2).  Since my youngest was born via C-section, I had been having abdominal pain, cramping, intermittent diarrhea, etc.  I had never had gastro problems before this.  Last month, I had a laparoscopy that found endometriosis/adenomiosis/ovarian cysts, all of which were cauterized. I continued to be extremely fatigued, losing weight, diarrhea, etc., so on a whim I had a blood test for celiac that was suggested months earlier by my gastro.  Of course, it was positive.  I am just coming to grips with all this right now.  I am unable to work because I am in the bathroom half the day, on my heating pad for the continued back pain from the laparoscopy, and always exhausted.  My family is going on the gluten-free diet to see if that helps me feel better and I am going to have my allergist check me for other food allergies and for a Candida albicans yeast allergy (the allergist found earlier last year that I had virtually no immunity to any strep infection strains and after a pneumonia vaccine shot, the numbers improved - I had been having 8-10 sinus infections a year, flu/bronchitis twice in the past 3 years, and various other weird infections requiring multiple rounds of antibiotics).

My question is - are all of these (PCOS, endometriosis, celiac) related? Are there good resources on these diseases if they are or people who actually have all 3? I feel like every few months I find out something new about myself, so I feel like I flit from problem to problem instead of addressing a larger cause.

A. Endometriosis is a completely independent condition, but PCOS and celiac are related.  Treatment of the endometriosis should be explored with your gynecologist.  The gluten-free diet should help with the other problems, but remember that celiac disease is an inherited condition, so you’ve had this all your life, only to be unmasked by the C-sections.  Thus, it will be several months before you’ll see a major benefit of the diet.

Q. Can endometriosis be made worse by celiac disease?

A. There is no doubt that untreated celiac disease can lead to an excessive sensitization of the enteric nerves, and thus augment any pain that might arise from endometriosis. Endometrial implants on the outer surface of the gut are surrounded by connective tissue-as a way of encasing these abnormal tissues. That process can also involve the intestinal muscles and nerves, and, when activated by the immune cells in the celiac patient, the painful sensation is enhanced. I see this also in IBS and IBD and coexisting endometriosis. When I control the inflammation with gut anti-inflammatory drugs, the pain improves. Other than that, these are two independent phenomena that often interact, and one should not consider celiac disease as a cause or effect of endometriosis.

Health and happiness,
Dr. Aron

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Q. I had my gall bladder removed just over a year ago and then went through a series of tests because I wasn’t feeling better after the surgery. After much pushing on my part, I had the blood test done for Celiac and tested positive on one of the antibodies. My doctor sent me to an allergist who has done RAST tests on me and found allergies to numerous other foods. I am now on a very restricted diet. I know the Celiac is here to stay but is there any possibility that as my gut heals some of the other food allergies will resolve themselves? Should I be re-tested for these other allergies at some point or are they here to stay too? I’m frustrated and struggling to find safe foods. I feel so much better but I’m tired of rice and broccoli!

A. It is not uncommon for latent celiac disease to be activated by abdominal surgery. Celiac disease is often the primary cause for many other food allergies, but these secondary or “downstream” allergies all improve on a gluten free diet. I would recommend staying on the restricted diet for two months to allow the GFD to heal the gut, and then eliminate all the other restrictions but stay on the GFD for life.

Health and happiness,
Dr. Aron

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Q. Is it common for kids (my son is 2.5) to have false negatives? How much does his IgA level affect the testing? My son has never had growth issues, is it still possible for his symptoms to be caused by Celiac? Can Celiac be jump started by rota-virus? Can the testing be misread?

Sorry for all the questions, but my son (2.5) has had chronic diarrhea, as well as many other issues, since he was hospitalized with rotavirus. After 2 endoscopes the cause of his problems is still undiagnosed. He is IgA deficient, but nobody has mentioned much about that, but I have read that can affect the testing.

A. Since the tTG antibody test is an IGA antibody, IgA deficiency will make the tests falsely negative. An IgG tTG test would be helpful, as would HLA DQ2, DQ8 genetic studies. If any of those are positive, he needs an intestinal biopsy. He may well have post-infectious irritable bowel syndrome, especially if there was stress at the time of the initial rotavirus infection. Very low doses of aminosalicylates such as balsalazide (use about 250mg in applesauce) daily could help.

Health and happiness,
Dr. Aron

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