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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Infertility And Celiac Desease
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10 posts in this topic

:unsure: I was not really sure where to post this. I will start with my story. About seven years ago, I had the normal two blood tests for Gluten, one came back a very high positive. I was diagnosed with a Gluten Enteropathy. I also had I guess what is now referred to as the Hermormis (not sure of spelling) skin rash, very bad, was misdiagnosed as Cystic acne for years and on countless antibiotics as a result. I also two different endoscopes, strangely they both came back with no damage to villi at all. My doctors were confused but still insisted that I must have a gluten intolerance or wheat allergy, so they put me on a gluten free diet. After just a few months on the diet, my skin completely cleared up! My dermotologist was in disbelief! So I stayed on the diet for a few years as best as I possibly could, although it got quite expensive, and at the time, I was in my late 20's and single and very broke all the time. In 2004 I got married. We got pregnant right away and we were so thrilled but it soon ended at 7 weeks as a miscarriage, we were devastated. I went in and had a D & C and that was that. At the end of that year my insurance at my work was changing and I was getting the Gluten blood test regularly to check my levels. After that year the test would cost me more so I opted to go in for the test at the end of the year. My doctor was amazed, all the Gluten blood tests came back negative! So they told me that it looked more like a wheat allergy and that the main thing is that I stay away from the hard grains; whole wheat, oats, barley, and others. I have found since then that my skin has stayed clear, and I can eat regular white bread in moderation, as well as other foods. I just stay away from the bad ones and I seem fine. My concern now is since then, it looks like like a lot of research has been done and my new doctor says that even though you don't have damage to the Villi, that I still may have Celiac Desease! We have been trying to concieve since we last miscarried, and have had no success, now I am wondering if it is because I have not been on a completely gluten free diet. I am reading the new research about Folic Acid, I started taking a natural vitamin with Folic Acid, I was also taking Fertility Blend, which I am not sure is gluten free or not. How long does someone have to be on a gluten free diet before seeing fertility results. I am really worried because I will be 44 in July, and we do not have a lot of time, also my insurance does not cover fertility treatments. Do you recommend any natural gluten free treatments? What is you advice for me. I am trying to get back into the gluten free lifestyle, but I seem to be going backwards now, more consipation, more stomach problems... Please help!

Susanne

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Hi Susanne, and welcome to this board.

First of all, OF COURSE your blood tests came back negative, that was to be expected after being on the gluten-free diet for several years. If your tests would have been positive, that would have indicated that you were still eating gluten. I expect that if you'd be tested now, that your test would come back positive.

Your doctor was very wrong and very ill informed to say that you could eat some gluten. Yes, it is possible that is the cause of your miscarriage and infertility. Your intestine may not be absorbing crucial nutrients to maintain a pregnancy or even getting pregnant.

Apparently, your digestive system is telling you something, by having constipation and stomach problems (both possible symptoms of celiac disease).

I advise you to go back to a strict gluten-free diet. Also, it might be a good idea to be tested for levels of essential nutrients, like folic acid, vitamin D, ferretin (iron), hemoglobin, vitamin B12, calcium and magnesium, and vitamin K. That way you know exactly what you need to supplement with. Also, a bone density scan is a good idea, as even children with celiac disease can already have osteoporosis, and you certainly could.

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Hi Susanne, and welcome to this board.

First of all, OF COURSE your blood tests came back negative, that was to be expected after being on the gluten-free diet for several years. If your tests would have been positive, that would have indicated that you were still eating gluten. I expect that if you'd be tested now, that your test would come back positive.

Your doctor was very wrong and very ill informed to say that you could eat some gluten. Yes, it is possible that is the cause of your miscarriage and infertility. Your intestine may not be absorbing crucial nutrients to maintain a pregnancy or even getting pregnant.

Apparently, your digestive system is telling you something, by having constipation and stomach problems (both possible symptoms of celiac disease).

I advise you to go back to a strict gluten-free diet. Also, it might be a good idea to be tested for levels of essential nutrients, like folic acid, vitamin D, ferretin (iron), hemoglobin, vitamin B12, calcium and magnesium, and vitamin K. That way you know exactly what you need to supplement with. Also, a bone density scan is a good idea, as even children with celiac disease can already have osteoporosis, and you certainly could.

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I don't know what keeps happening to my posts. I posted another response but it seems to jam or something, it is probably my computer, I am also a writer so I may be making things too long. sorry. I will try to keep it short.

Here are the main questions:

I have had a strange bloating or stomach gain, since I started on gluten again, and since my last miscarriage, I think it is more than post pregnancy weight because it makes me look about 4 months pregnant, and it seems to increase when I eat. has anyone here had this?

Urla, what doctor should I go to for these tests?

Is there anyone here ttc after 40 and just coming off of gluten, or who has been gluten free in the past and managed to get pregnant? I am really worried about having to wait another six months before trying because I will be 44 in July although my ovarian reserve is really good but my progesterone and estrogen is low, but my doctor says that I have the reproductive function of a twenty year old. I have a lot of good eggs. Also are any of the fertility drugs or shots, or Fertility blend gluten free?

Lastly, how should I start with a gluten free diet again, I do not want to suddenly shock my system? I have already for over seven years given up whole wheat, oats, barley and grains, but I still eat regular white bread, because I do not have the intestinal damage and I have never had a positve endoscope, only blood tests, although after my miscarriage and I was eating a ton of gluten for a few years at that point, I got a negative blood test.

I am so confused and don't know where to start. I keep messing up, I had rice and vegetables yesterday, no bread, passed on the pita bread, but last night and today I feel awful.

Please help me for a starting point, and something that won't hurt with the folic acid absorption if I were to be pregnant now.

Also how do you guys get the folic acid in your diet. I take one prenatal vitamin a day with 400 mgs of folic acid, is this enough? It is gluten free. It is called Pregnancy Plus, something similar helped me to get pregnant last time. I will end here so I don't crash it again.

Sus

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Hi Susanne, and welcome to this board.

First of all, OF COURSE your blood tests came back negative, that was to be expected after being on the gluten-free diet for several years. If your tests would have been positive, that would have indicated that you were still eating gluten. I expect that if you'd be tested now, that your test would come back positive.

Your doctor was very wrong and very ill informed to say that you could eat some gluten. Yes, it is possible that is the cause of your miscarriage and infertility. Your intestine may not be absorbing crucial nutrients to maintain a pregnancy or even getting pregnant.

Apparently, your digestive system is telling you something, by having constipation and stomach problems (both possible symptoms of celiac disease).

I advise you to go back to a strict gluten-free diet. Also, it might be a good idea to be tested for levels of essential nutrients, like folic acid, vitamin D, ferretin (iron), hemoglobin, vitamin B12, calcium and magnesium, and vitamin K. That way you know exactly what you need to supplement with. Also, a bone density scan is a good idea, as even children with celiac disease can already have osteoporosis, and you certainly could.

I just got tested again and got my results back. This time I got the IGG, IGA and some kind of new test, I think the ELISA. I am very confused. All the tests for were a very high normal, negative. I have been eating gluten and on gluten, not gluten free diet for seven years now. Now, I need you guys to keep an open mind about what I am about to say, because I have read a few of your past posts, and I know this is a very sensitive nature topic. I am also not in denial, if my doctor still tells me in a few weeks to stay gluten free I will for my fertility's sake and the future of my family, but I am wondering now about the old adage, that medicine is not an exact science. I have also read a lot about this and I even followed a gluten free diet seven years ago for about a year, but not even perfect, to be honest. I mainly stayed away from the hard grains, basically whole wheat. I had the IGG blood test seven years ago before I did anything, and it came back positive, since then I get retested every year, and since I have always been negative as well as two negative biopsies. I have been thinking about what someone said on this board a couple days ago about levels of Celiac Disease and Gluten Intolerance, ex, like diabetes, maybe there is a stage 1, 2, 3. Maybe that is what is going on, but I also read an article today about a research study that said, "The IgG is not as specific (it can be positive in non celiacs). " And on this website, Celiac.com, I read, "In approximately 21% of patients with other gastrointestinal disorders, this test might yield false positive results but is less likely to yield false negative results. " This is taken from Interpretation of Celiac Disease Blood Tests Results, that is on this forumn. I also know that you have said that false positives, are rare, but you have never said impossible. I am somebody, that rare seems to happen to a lot. Anyways, the reason I am writing this, is my concern of "other gastrointestinal disorders," that is mentioned. I want to be sure that I don't have something else, that is all. I am very concerned with my fertility, and future children and I want to be sure. You say follow a gluten free diet and find out, well, I have for two weeks now, and even before, I seem to react bad to any type of whole grain, even rice and potatoe grain. I am wondering now if it is a whole grain allergy, because when I eat just regular white bread, not any whole grain, my symptoms subside. I am wondering if it was possible that I had an allergy to whole wheat, and whole grains. If this is the case then a lot of Celiac food, would still make me sick, and it does seem too. I have noticed in the past, that when I have tried the gluten free food, I have gotten pretty sick. I have done pretty well staying away from just the whole grains. Now maybe there is a link here to the gluten, I don't know. I also don't want to ignore the possibility that I could have some other gastrointestinal disorder that is mimicing the Celiac diseaes, does any one know what diseases that they may be referring to? I am always going to stay away from whole wheat, barley, oats, etc. I just don't seem to tolerate even the substitutes. I don't know if anyone has any elightment on this or suggestions. I am really confused but I am going to talk to my doctor more about it. I think like any other tests, there is a possibility of false positives, that could indicate some other illness, I am going to dig further and further to see If I can figure it out. If I have indeed an allergy to whole wheat only, I am wondering if this is why my test was positive seven years back, because before then I was consuming the whole wheat. There must be a whole other category out there that has not been discovered yet. Please remember please keep an open mind on this, I am not in anyway suggesting that you guys do not have this or that it is not devasting, if anything, I hold my hat off to you, for being so brave and caring. I admire all of you for what you are doing, it is not easy, I have been there. I just want to be sure that I am doing the right thing for my body and future child. I am also going to get testing hopefully this week, for my folic acid, etc. levels, because I agree that that would be a starting point to truly know if my body is absorbing this valuable acid correctly. Anyways sorry so long, but I wanted to point out my results and perhaps suggest that maybe there could be error in diagnosis, and just keep an open mind.

Susanne

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On the topic of Infertility I am wondering how many other people have had problems with it and Celiac. I am 27 just got diagnosed and have not yet tried to have kids. However it has been a concern because on one side of my family not one of the females has had any children for four generations. And possibly longer. Some have been pregnant here and there but all ended in miscarrage. I only recently found out I have celiac although I have had stomach problems my whole life. I am getting married soon and I am hopeing that the diet will solve the unexplaned infertility and miscarrages as we desperatly wish to have children of our own. So basically I am wondering if anyone out there has had or heard of similar problems and has any information on the subject. Its seems contraversal in searches wheather or not it it is even supposed to be related.

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On the topic of Infertility I am wondering how many other people have had problems with it and Celiac. I am 27 just got diagnosed and have not yet tried to have kids. However it has been a concern because on one side of my family not one of the females has had any children for four generations. And possibly longer. Some have been pregnant here and there but all ended in miscarrage. I only recently found out I have celiac although I have had stomach problems my whole life. I am getting married soon and I am hopeing that the diet will solve the unexplaned infertility and miscarrages as we desperatly wish to have children of our own. So basically I am wondering if anyone out there has had or heard of similar problems and has any information on the subject. Its seems contraversal in searches wheather or not it it is even supposed to be related.

Since nobody seems to be answering either of us, I just want to say that I am going to get my progesterone levels checked after ovulation, although because I am in my forties, it is difficult for me to determine when I am ovulating, I actually think it may be way after day 14, and I also think I might have a luteal phase defect. Also Ursa mentioned above to get my vitamin levels checked, I am in the process of doing this. Maybe you too could have your progesterone levels and vitamins checked. I understand that it is tied to the folic acid absorption with Celiac, so I am guessing if our folic acid levels are low then that would show the problem, but if they are not low, then perhaps the Celiac is not the problem, at least not the main problem. Just thought I'd share that with you. I too am really confused over the role Celiac plays in the infertility. I think a lot more research needs to be done on Celiac over all. Just my opinion.

Sue

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Ladies:

In general, the consensus appears to be that it is undiagnosed/untreated Celiac that increases the risk of other health problems, including fertility issues. The theory is that once you are 100% gluten free and your body has healed, as long as you maintain the diet, your body returns to a normal state. This is the case for most issues, although there still is a slightly elevated risk for some sorts of cancer and Celiac.

Undiagnosed Celiac has been and has not been linked to adverse outcomes. However, for many people, it can definitely be a problem. Dr. Green has been advocating Celiac testing for all people with infertility problems.

See this link for some basic info: http://www.celiac.com/st_main.html?p_catid...-31107470276.f8

I also recommend going to www.pubmed.com and searching celiac and pregnancy, and celiac and fertility.

I hope this helps.

Laura

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Thank you Laura, that was very helpfull. I have been the first person diagnosed with celiac in my family however I believe that many or all of my fathers side has it. I will be so grateful if this means I will be the first of them to have children.

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Cory:

You might be interested in the book listed in my signature. Dr. Green discusses pregnancy/fertility in it, among other things, and I think it is a wonderful resource.

I hope that you will be able to have children! Best of luck, and keep us updated. Let us know what we can do!

Laura

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