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Fertility and Pregnancy in Women with Celiac Disease by Michelle Melin-Rogovin

This article originally appeared in the Autumn 2002 edition of Celiac.coms Scott-Free newsletter.

At the University of Chicago Celiac Disease Program, women with celiac disease who have recently become pregnant often contact us. Remarkably, the questions we receive from these women seldom stray from one issue, that is, whether or not to maintain a gluten-free diet while pregnant. Most women mistakenly believe that the gluten-free diet will deprive their developing fetus with the nutrients it needs, and hurt the growing baby. In fact, for a pregnant woman with celiac disease, remaining ON the gluten-free diet is the best and only option for the health of mother and child. The gluten-free diet provides pregnant women and their babies with all of the nutrients they need to grow and be healthy.

Fortunately, for all concerned, there have been excellent research studies on fertility, pregnancy and celiac disease conducted by top-notch investigators around the world. While this important research has mainly focused on women, it is important to note that researchers have established (since the 1950s) that men also suffer from infertility due to undiagnosed celiac disease.

Celiac Disease and Fertility
In research studies to date, the incidence of celiac disease in women with unexplained infertility has been estimated at four to eight percent. While a number of studies have demonstrated that unexplained infertility can be successfully treated with the gluten-free diet, others have shown that there are factors other than malabsorption of nutrients that result in infertility, delayed menarche (the start of the menstrual cycle) and early menopause.

In two large case control studies, researchers examined the incidence of delayed menarche, amenorrhea (cessation of the menstrual cycle for short periods of time), and early menopause. Both studies enrolled women with celiac disease who were following the gluten-free diet or eating a gluten-containing diet.

They found that women who were not on the gluten-free diet started their menstrual cycle up to a year and a half later than women with celiac disease who were following the diet. In addition, researchers found that up to 39% of women not on the diet experienced periods of amenorrhea, compared to only nine percent of women who were on the gluten-free diet. As you would expect, women with celiac disease who were not on the gluten-free diet were found to enter menopause four to five years earlier than women with celiac disease who were on the diet.

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Researchers who have studied women with infertility have found that they test positive for celiac disease-related antibodies at a rate that is ten-fold higher than the normal population. They have also demonstrated that women with infertility who are diagnosed with celiac disease do not always exhibit iron, B-12, or folate deficiencies, which points to other celiac disease-related explanations for the development of their infertility.

Celiac Disease and Pregnancy
Researchers have also studied the effect of the gluten-free diet in pregnant women with celiac disease, in order to determine any impact on the developing fetus and the pregnancy outcome. In a study of 25 patients and 60 pregnancies researchers found that 21% of women who were not on the gluten-free diet experienced pregnancy loss, and 16% of women experienced fetal growth restriction. Researchers also remarked, however, that successful pregnancies occurred before and after diagnoses for many women in the study.

In a large Danish study with 211 infants and 127 mothers with celiac disease, researchers found that the mean birth weight of children born to mothers on a gluten-containing diet was significantly lower than babies born to mothers without celiac disease. Interestingly, this same study determined that women on the gluten-free diet gave birth to children weighing more than those born to mothers without celiac disease!

In a case-control study that looked at the effect of the gluten-free diet on pregnancy and lactation, investigators learned that women with celiac disease who were not on the gluten-free diet experienced pregnancy loss at a rate of 17.8%, compared to 2.4% of women with celiac disease who were on the gluten-free diet. These researchers found that there was no difference in the occurrence of pregnancy and fertility problems in women with sub-clinical (positive blood test, negative biopsy) or clinical disease (positive blood test, positive biopsy).

Finally, in a group of women with celiac disease who had been pregnant more than once, researchers looked at the effect of the gluten-free diet on their future pregnancies. They concluded that the institution of the gluten-free diet upon diagnosis caused a relative 35.6% drop in pregnancy loss, 29.4% drop in low-birth weight babies and an increase of two and a half months of breastfeeding.

While the malabsorption of nutrients is not the only cause of fertility and pregnancy-related problems for women with celiac disease, the gluten-free diet is essential to improving the health of women and their babies.

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40 Responses:

 
Claire Poole
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said this on
07 Dec 2007 10:48:30 AM PDT
Informative

 
mirandahc84
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said this on
08 Jun 2011 11:09:57 PM PDT
I've been TTC for years now and doctors say I'm fine! my bf however wont get tested because he already has a child and says "I'm fine because I already have a child..it's you"!!!

Anyways... I just recently found this information about CD and I think I have this because I have many of the symptoms!! I was wondering if the people who have been tested if your insurance paid for any testing???

 
margaret
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said this on
11 Oct 2013 5:48:11 AM PDT
Ive got two children aged 3 and 4 and it wasn't until after my son I found out I had celiac disease, I had a miscarriage 3 months ago I was 9 weeks now I am pregnant again 7 weeks and expecting twins, I am on the diet, it was hard at first but you get use to it, most gluten free foods tastes awful.

 
Natalie
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said this on
24 Jan 2008 9:00:45 PM PDT
My second baby was born late at a whopping 9lbs 4 oz! My midwife was a little shocked that my baby was so big! I had been gluten-free for 2 years.

 
josie
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said this on
20 Dec 2010 7:07:34 AM PDT
How was a gluten free diet while being pregnant? I've been a celiac for 3 years now and been married for almost 2 years and we want to start trying this spring, but I'm scared of the diet while being pregnant and being clueless at what I can eat to give all the nutrients to my baby while I have this allergy...

 
Leslie
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said this on
28 Jan 2008 8:12:00 AM PDT
We have been trying for a second child for 1 1/2 years now. my doctor is testing me for celiac disease. As a coincidence (or not!) I had been on mostly gluten-free diet when we accidentally conceived our first child...I'd love to hear anyone's experience!

 
tamara lothian
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said this on
08 Nov 2011 7:28:15 AM PDT
Hi, I am a celiac and I have been told that I might not even be able to carry a baby at all as I have had 1 miscarriage. I carried my baby until I was 3 months pregnant and I lost it and they are now having to test me for lots of things because no one in my family is a celiac at all and I been one for 18 years of my life and it is really horrible. I hope you conceive you 2nd child.

 
Cheryl
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said this on
27 Feb 2008 2:18:00 PM PDT
We are thrilled to be pregnant after trying for 6 years! I was diagnosed with Celiac sprue in September but started a gluten-free diet in August, knowing it helped. In November we found out I'm pregnant and due in August. I can't tell you how happy I am that I have been diagnosed and that the gluten-free diet has changed my life.

 
Rita
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said this on
05 Apr 2008 2:09:39 AM PDT
We'd been TTC for 4.5 years, I went gluten-free 4 months ago and am now 7 week pregnant! God Bless Gluten Free!

 
Wendy
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said this on
16 Jun 2008 11:43:34 AM PDT
I was following a very reduced grain diet and became pregnant but stopped and had a miscarriage. This encourages me to try again since we haven't conceived in 4+ years.

 
Elizabeth
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said this on
24 Jun 2008 9:21:48 AM PDT
I am 8 weeks pregnant with my second. My 1st son had a neural tube defect (mild-I was undiagnosed) and I have been gluten free for about 3 months now. I hope I was Gluten-Free long enough! From what I've read, baby should be fine.

 
Kate
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said this on
13 Jul 2008 5:53:22 PM PDT
Have been gluten-free for five years and thinking of starting a family in a year. Feel hopeful that everything should be normal if I continue to take care of myself in the best way I can. Concerned with increasing folic acid in my diet. How much and how. Any suggestions?

 
ash
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said this on
02 May 2010 5:22:48 PM PDT
There are gluten-free folic acid supplements made now.

 
Jeanna
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said this on
31 Jul 2008 4:23:27 PM PDT
I was surprised to hear that women with celiac would consider not following a gluten free diet while pregnant. I was diagnosed with celiac as very small child and have strong reactions. For me there is no option of whether or not to follow a gluten free diet.

 
Kristen
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said this on
18 Dec 2009 9:55:33 PM PDT
Same here, I've been gluten free going on 8 years. I have no idea why people think "Maybe THIS time I won't get sick?"

 
Jan
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said this on
04 Oct 2008 5:34:04 AM PDT
This article really hits home. I was just diagnosed with celiac disease, my daughter is 19 months old. She had fetal growth restriction, preterm birth and low birth weight. This article now makes what happened to her make sense. She has some foot issues but should be fine in a couple of years. I will be getting her tested right away. For the next pregnancy I will not be as scared.

 
Alicia Woods
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said this on
12 Jan 2009 5:43:03 PM PDT
Wow, I just found out I have celiac disease and started a gluten-free diet a week ago. I have been TTC for almost 5 years with 3 miscarriages. And feel so hopeful that this may just be the answer to my infertility.

 
Jem
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said this on
21 Feb 2010 10:14:33 AM PDT
Hi I have just been diagnosed with coeliac disease after a year of trying to conceive. I am curious to know how you have got on a year later.

 
Leeanne
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said this on
08 Oct 2011 5:33:28 AM PDT
I have similar questions.

 
C. Huth
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said this on
29 Mar 2009 12:39:34 AM PDT
I had only been diagnosed with coeliac for 3 months when I fell pregnant. Sadly, I miscarried but after having read this article I know it is possible to have a successful and relatively normal pregnancy if I continue on a gluten-free diet. Our first child had a low birth weight but I didn't know that I had coeliac at the time. She is a perfectly healthy 3 year old, but we have had her tested for coeliac also, just to be sure she is getting the right nutrients. We are just waiting for the results. Hopefully having being diagnosed with coeliac disease and eating the right food will help us succeed in giving our daughter the baby brother or sister she has been begging us for!

 
SLM
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said this on
11 Apr 2009 3:21:57 PM PDT
I was and still am undiagnosed. (Docs tell me its in my head!) However my 2 yr old is allergic to wheat, barley, rye, etc. We both went on a gluten free diet while nursing and my asthma has cleared up along with my various GI problems. He had an intrauterine growth restriction. I am now expecting baby #3 and I have had no issues with asthma nor pregnancy thanks to the gluten free diet. Thank God for gluten free.

 
Maps
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said this on
21 May 2009 1:31:43 AM PDT
It is 2:30 AM and I am up researching being pregnant as a Celiac. My husband and I are terrified of losing a baby or having birth defects. My sister, who is also Celiac, had 2 babies die after carrying them for about seven months. We have both recently found out we are Celiacs and are maintaining healthy gluten-free diets. This article gave me hope that I will be able to conceive without any problems. However, we still haven't conceived after 10 months and that scares me.

 
Melinda
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said this on
05 Nov 2009 9:49:41 AM PDT
I am wondering how you tries have come along. I have been gluten-free since August, just now starting to try, have many fears--my husband is worried.

 
Dede
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said this on
31 May 2009 9:22:21 PM PDT
I also had problems conceiving before my celiac diagnosis. I got pregnant after 6 years of trying, while on Weight Watchers. The doctors told me it was just because of the weight loss, but I have kept the weight off but not been able to get pregnant again. When I started thinking about it, while on WW I was eating mostly gluten free to save points (no bread, cookies, pancakes, etc...) So I have been completely gluten free for 2 1/2 weeks now. Keeping fingers crossed that I will get pregnant again!

 
Amy
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said this on
25 Jul 2009 11:21:54 AM PDT
I found out I was a celiac AFTER I had my first child. She came out a whopping 10lbs! now I'm pregnant again and I'm going gluten free. (my first child unfortunately has been diagnosed with autism. :( BUT! this time I know that I do have problems with wheat and have swore completely off! Whatever I have to do to keep my kids safe and healthy I will do. I just hope THIS kid isn't bigger than my last one!.

 
Sue
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said this on
13 Sep 2009 2:28:06 AM PDT
Hi Amy, I wonder what your symptoms of celiac were after having your first child. Did you have joint pains/stiffness/weight loss. My sister in law had these symptoms but was diagnosed with Rheumatoid Arthritis. She now thinks the condition is food related as when she eliminates certain foods she is so much better. She has some symptoms that could be celiac - numbness in fingers and MORE weight loss. All these problems can be one of several diseases can't they?

I am sorry that your first baby has been diagnosed with Autism but again I have seen many stories of vast improvement by diet.

I am a believer that much of what we eat is making us ill! Of course, treating the vast majority of patients by diet does not make money for drug companies or the NHS!

 
anonymous
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said this on
30 Aug 2010 6:24:24 PM PDT
I have undiagnosed celiacs disease or gluten intolerance and now follow a strict gluten free diet. My brother had years of GI problems and many second opinions by doctors he finally found one who said "celiac disease". In his case, celiac sprue. Our whole family started looking into similar symptoms we were having, and my other brother was then diagnosed, and myself, self diagnosed. Here is my story.
I was always very small and menstruation came at 17. I started having debilitating brain fog, loss of concentration and was told by doctors I was depressed. I knew they were wrong and learned to deal with it the best I could, but the fog made me have anxiety and lose self confidence because I thought I was losing my brain. I married at 24 and pregnancy came within a year. No problems conceiving. I had inter-uturine growth retardation, and my son was born very small. I gained little weight and had a very unhealthy pregnancy. two years later I conceived my second child. seemingly a healthy pregnancy, gained 45 lbs and gave birth to a full term boy 7lbs5oz., who at age 2 was diagnosed with autism. I had no idea gluten was a problem for me at this time, however I had heard of gfcf helping children with asd. It never crossed my mind until my brother who refused to give up, and an educated dr. brought it to the forefront two years ago. My children and I are now gluten free casein free. I, with no more brain fog, however, am in early menopause at the ripe old age of 34.

 
Dutchess
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said this on
22 Nov 2009 5:47:00 PM PDT
I have a lot of family diagnosed with celiac. (one being my sister) I've heard it is hereditary and I have many symptoms so I went on a gluten free diet while waiting to get tested... When I was finally did get to see a specialist he tested (blood test) on my first appointment without any warning. I had been gluten free for about a year and because of this it came back negative for gluten intolerance. He claims it is impossible to be completely gluten free so he diagnosed me with irritable bowel with colitis and I have been positively tested with a wheat allergy.

Anyway I took his advise and went back to gluten, and just increased my fiber intake. Well my cycle is all messed up and I have been unable to get pregnant so far so I'm going gluten free again. Hope it works!! I know I feel much better off gluten I don't need a test to tell me that!

 
toni
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said this on
30 Jul 2010 1:38:49 PM PDT
Hi i was just reading your post from November, when you were tested for celiac disease, if you were on a gluten-free diet then it would not have showed up on your test results. If you feel that being on a gluten-free diet is best for you, then I would stick to it.

 
Rebecca
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said this on
16 Nov 2010 6:55:15 PM PDT
If you have been on a gluten free diet for a year before testing you can get a false result that you are not celiac, if it runs in you family and you still have symptoms I like irritable bowel then I would go to a gluten free diet anyways. Or eat a lot of gluten products and get retested to be sure. But if you feel much better off of gluten and have a wheat allergy then I would suspect that the test was incorrectly because of the low level of gluten in your system. I have heard that blood test are not very accurate to begin with.

 
Eve
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said this on
08 Jul 2010 9:44:46 AM PDT
Hey I''m 17, 10 weeks pregnant with twins and I'm a celiac. I read this article and started to worry about my babies. I''m scared that I might have a miscarriage.

 
Pam
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said this on
12 Aug 2010 3:30:32 AM PDT
I am 56, went through menopause in mid thirties. Only had one son, he was preterm, low birth weight, full of allergies, slow grower. He was diagnosed at 2 with celiac, but unfortunately, the doctors back then did not explain it was genetic. We thought it was an allergy he would outgrow. I was not diagnosed until I was 55 years old and now too many problems to mention. My villi are not coming back even after 18 months on the diet strictly. I wish we had websites when I was in my childbearing years, I would be different today!

 
Jade
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said this on
10 Jul 2011 5:42:45 AM PDT
I found out I was gluten intolerant 4 months after giving birth to my first child. I had the runs for 3 weeks and wasn't going away, had a blood test and was told I was gluten intolerant. I had the perfect pregnancy she was 7p 10 ounces, and very healthy. I followed the gluten free diet and diarrhea cleared up straight away, and when I have gluten I get a crook tummy, bloating and diarrhea. I have been following diet very strictly for at least a year, it took me 6 months to fall pregnant and I had a missed miscarriage, DNA turned into a molar pregnancy (fluid filled sacks), didn't find out until 3 months and had to have a curett, and doctor told me not to try falling pregnant for at least 12 months. I'll go through a natropath and do acupuncture next time any thing I can do to prevent miscarriage!!

 
Suzanne Howard
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said this on
09 Feb 2012 5:58:44 AM PDT
I was diagnosed with celiac when I was 3 years old, I'm now 27 have 2 children and they where both big boys. My eldest was 9 lbs. 4 oz. and I was 10 days over with him, my youngest was 11 lbs. and I was 13 days over with him. So I have found that with this diet you can get pregnant, and you can have very healthy children so long as you stick to your gluten free diet.

 
SandraB
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said this on
11 Apr 2012 6:25:59 AM PDT
I've never had a celiac test, but I distend very noticeably if I eat gluten, rye or barley: I assume I am gluten sensitive. My pregnancy with my son who is Asperger's, i.e., autistic, was before this discovery, so I ate gluten throughout. I felt so tired at times it felt as though I was dying, and I was both hungry and nauseous all the way through the pregnancy - which would fit with malabsorption. My son tried an exclusion diet at 13 and found he gets stomach aches with gluten.
One big Danish study (in 2007 I think) found that celiacs were three times more likely to have an autistic child. But of course the real risk would be the non-diagnosed celiacs and gluten sensitive mothers - no study has looked at that. Go gluten free before pregnancy, take vitamins and minerals, and up your Vitamin D intake. That should reduce the risks.

 
Julie
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said this on
19 Apr 2012 11:09:02 AM PDT
I was TTC for a year, and my fertility doctor wasn't able to pinpoint what was wrong with me besides having an elevated FSH. She said I have about a 2% chance of conceiving with my own eggs, and should just consider adoption!

I moved onto a naturopath a month later, and found out I had a gluten sensitivity from my bloodwork. I was then tested via biopsy and was positive for celiac. I stopped gluten cold turkey, and A MONTH later, I became pregnant! One single month was all it took to correct what seemed to be a medical mystery.

If you're searching for explanations for your infertility and haven't found any yet, make sure you didn't overlook celiac!

 
Cem
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said this on
07 Sep 2012 1:11:15 PM PDT
This article does not answer any questions of what happens if you are diagnosed with celiac disease, are eating gluten-free and still can't conceive. When will someone ever broach that topic?

 
joy
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said this on
11 Nov 2012 10:43:25 AM PDT
I'm 19. I'm on my 3rd pregnancy; the first 2 I miscarried at 6 weeks and 11 weeks. I was diagnosed with celiac disease at 4 years old. I was gluten-free til I was about 12... then I got to school lunches and it was so hard with the main meals always being noodles and pizza. With my last two pregnancies, I was on a normal gluten diet just because I thought it would make them normal. I was surprised when i found out I was pregnant again, and immediately went on a gluten free diet. I'm 8 weeks 3 days and measuring at 6 weeks... hopefully it's just a mistake?

 
Trisha
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said this on
02 Aug 2013 12:34:31 PM PDT
I have celiac disease, and I'm scared because I'm not as strict as I need to be. I keep wondering how badly this intolerance is going to affect my chances. So I'm planning a strict diet and cleanse. I don't want a lifestyle of issues just because I needed to have a donut, haha.

 
sarahjeffries
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said this on
22 Apr 2015 1:37:23 AM PDT
In fact, there are a lot of things to be considered by women who wish to get pregnant. One of the important things includes; paying attention towards food consumption in purpose of avoiding severe problem related to fertility.




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I am very interested in this too. My daughter tested negative for celiac, but has terrible primarily neurological symptoms. Because she tested positive for SIBO at the time and was having some GI symptoms, I was told it was just a Fodmap issue. I knew better and we have been gluten free for 2 years. Fast forward to this February. She had a SIBO recurrence that I treated at home with diet and herbal antibiotics because I couldn't get the insurance referral. She was doing great. Then stupid me brought in gluten containing chick feed for the new baby chicks we got. Feed dust everywhere. Total mess. Really, no GI symptoms (she was SIBO free by then)...but the neurological symptoms! my daughter couldn't walk for three days. Burning down one leg, nerve pain in the foot. Also heaviness of limbs, headache and fatigue. Better after three days. But unfortunately she had a TINY gluten exposure at that three day mark and had another severe reaction: loss of balance, loss of feeling in her back and arms, couldn't see for a few seconds, and three days of hand numbness, fatigue, concentration problems. Well, I actually contacted Dr. Hadjivassilou by email and he confirmed that the symptoms are consistent with gluten ataxia but any testing would require a gluten challenge. Even with these exposures, antibodies would not be high enough. His suggestion was maintain vigilance gluten free. I just saw my daughter's GI at U of C and she really only recognizes celiac disease and neurological complications of that. But my impression is that gluten ataxia is another branch in the autoimmune side of things (with celiac and DH being the other two). At this point, I know a diagnosis is important. But I don't know how to get there. We homeschool right now so I can give her time to heal when she is accidentally glutened, I can keep my home safe for her (ugh, that I didn't think of the chicken feed!) But at some point, she is going to be in college, needing to take exams, and totally incapacitated because of an exposure. And doctors state side that are worth seeing? Who is looking at gluten ataxia in the US?

Caro..............monitoring only the TSH to gauge thyroid function is what endo's do who don' t do a good job of managing thyroid disease. They should do the full panel and check the actual thyroid hormone numbers.........T3 and T4. The importance of the TSH comes second to hormone levels. In order to track how severely the thyroid is under attack, you need to track antibody levels.......not the TSH. I did not stay with endocrinologists because I found they did not do a very good job and found much greater help and results with a functional medicine MD. You should not have a goiter if your thyroid is functioning well and your TSH is "normal". Maybe they should do a full panel? Going gluten free can have a profound affect for the better on thyroid function and that is something that is becoming more and more accepted today. Ask most people with Celiac and thyroid disease and they will tell you that. My thyroid never functioned well or was under control under after I discovered I had Celiac and went gluten free. It was the only way I got my antibody numbers back down close to normal and they were around 1200 when it was diagnosed with Celiac. I was diagnosed with Hashi's long before the Celiac diagnosis. I am not sure Vitamin D has anything to do with thyroid antibodies but who knows? Maybe it does have an affect for the better. It is really hard to get Vitmain D levels up, depending on where you live. Mine are going up, slowly, even after 12 years gluten-free but I live in the Northeast in the US and we don't have sun levels like they do in the South. I take 5,000 IU daily and that is a safe level to take, believe it or not. I get no sun on my job so the large dose it is! Having Celiac Disease should not stop you from being able to travel, especially S. America. I travel, although I do agree that some countries might be very difficult to be gluten free in. You can be a foodie and travel with Celiac so no worries on that front. You may not be able to sample from someone else's plate, unless they are eating gluten-free too but I have had awesome experiences with food when traveling so you can too!

I don't know what you drank or where.... so here are a few thoughts. - sure, a dive bar might have dirty glasses and serve a cocktail in a beer glass? But a nice reminder place, with a dishwasher, should be fine. If it's a sketchy place, Stick to wine, then it's served in wine glasses that aren't used for beer or bottled ciders in the bottle. - ciders on tap might, just a slight chance, have an issue. Because of beer on tap, mixed up lines, etc. - you may have a problem with alcohol - you may have issues with The high sugar content of the drink. I know I have similar issues if I drink serveral ciders of extra sugary brands - are you positive it was a gluten-free drink? Not this " redds Apple" pretending to be a cider - it's beer with apple flavor. Or one of those " gluten removed " beers?

Hi Stephanie, I'm also from the UK, I've found this site more helpful than anything we have! As already mentioned above, in my experience it could depend on what and where you were drinking. Gluten free food and drink isn't always (not usually) 100% gluten free as you may know, maybe you have become more sensitive to even a trace of gluten that is probably in gluten free food/drink. Is it possible you have a problem with corn, particularly high fructose corn syrup that is in a lot of alcoholic drinks? This was a big problem for me and the only alcoholic drinks I can tolerate are William Chase vodka and gin. I contacted the company last year and all their drinks are 100% gluten and corn free, made the old fashioned way with no additives, so maybe try their products if you like the occasional drink and see how you get on. If you drink out, not many pubs sell their products but I know Wetherspoons do and smaller wine bars may too. l was never a spirit drinker but I must say their products are absolutely lovely! Very easy on a compromised gut too considering it's alcohol. I second the suggestion on seeing a natural health practitioner. I've recently started seeing a medical herbalist, as I've got nowhere with my now many food intolerances since going gluten free last year and I've noticed a difference in my health already.

Sorry for the very late reply and thanks for the replies, I didn't get a notification of any. In case anyone else comes across this and has been wondering the same as I was, I did try a vegetable broth and I did react to it in the same way as if I'd eaten the vegetables. As for the candida, I've been using coconut oil and am seeing a medical herbalist for this and leaky gut. It's only been a few weeks but I've noticed an improvement all round.