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Gluten=bad

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Gluten=bad Apprentice

Hi all, up until about a month ago I had only vaguely heard of Celiac disease. I went to my doctor on February 8, to have a yearly physical. She knew about my past history with fertility problems and I told her that I had been diagnosed with PCOS about a year prior by my reproductive endocrinologist. The first thing she said to me is "have you ever been tested for Celiac disease?". The answer of course was no so she ordered some blood work to be done that day. She did the gene testing and the antibody testing. I still haven't heard anything as of yet. My current symptoms include:

Red itchy rash that I've had for some time on my back

Diarrhea/constipation (with mostly diarrhea) for several years now

Infertility

Bloating/abdominal pain

Family history of autoimmune disease, although no one has been diagnosed with Celiac disease

After doing research, a diagnosis of Celiac disease would make sense to me on so many levels. However, if I do not have the disease I'm wondering if I should start eliminating certain food groups until I find out what is causing this or perhaps see an allergist? Sorry for the long post I'm just wondering where I go from here.


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RiceGuy Collaborator

Be thankful that your doctor suggested Celiac. It does sound quite possible, given your symptoms. However, no matter what the tests say, I'd recommend the gluten-free diet anyway, as I'm sure others here will too. This is because the tests often give false negatives, plain and simple. You may also find you need to eliminate other foods too, at least for a while. Dairy is probably the one to try first, along with going gluten-free. You can then try adding it back after you are feeling better.

Hope you feel better soon!

Welcome to the board!

Gluten=bad Apprentice
Be thankful that your doctor suggested Celiac. It does sound quite possible, given your symptoms. However, no matter what the tests say, I'd recommend the gluten-free diet anyway, as I'm sure others here will too. This is because the tests often give false negatives, plain and simple. You may also find you need to eliminate other foods too, at least for a while. Dairy is probably the one to try first, along with going gluten-free. You can then try adding it back after you are feeling better.

Hope you feel better soon!

Welcome to the board!

Thanks, I wanted to share a few pics of possible Dermatitis Herpatiformis on my back. What do you think?

Skinrash1.webp

Skinrash2.webp

RiceGuy Collaborator
Thanks, I wanted to share a few pics of possible Dermatitis Herpatiformis on my back. What do you think?

Well, I'm not a DH expert, but it does look similar to what I had. I'm sure others on the board will be able to judge better. Mine was (thankfully) somewhat mild, and now generally doesn't show itself very much or often.

Apparently, iodine can make it worse, so it is suggested to avoid foods high in iodine, such as kelp. Salt also seems to aggravate it, which I suppose is because of the increased water retention. Likely differs from person to person I'd guess.

skichikk18 Rookie

I also have PCOS and have been having trouble getting pregnant. I am currently seeing a fertility doctor. I went gluten free without a solid diagnosis from my GI dr. He suggested I try it. I am hoping it also helps with the fertility issues. In my mind, if I feel this much better it has to help. I had similar symptoms of diaharria for years. So far I feel good though.

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    • Jsingh
      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
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