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Just Diagnosed...


Monklady123

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Monklady123 Collaborator

Hello everyone. I'm new here, and have been reading all the posts for the past several days. I've got a "gluten-free" notebook and I've been taking good notes with all your helpful advice. My story is that I suddenly, about three months ago, got all the intestinal symptoms that you all have described. I thought I'd eaten too much fiber the day before, because I had added all-bran to my morning cereal, thinking I hadn't been eating enough fiber. Then I started getting bad headaches (I never get headaches), and fatigue, and weakness in the morning, and bloating. I finally went to the doctor, thinking I had colon cancer (a worrier by nature, lol) even though most of those symptoms are not present in colon cancer. The first thing she said to me was "okay, sounds like a gluten problem to me...either that or lactose, or both." (after reading about some of your problems in getting diagnosed I'm thinking that this doctor is a keeper!) I said "but I've never had allergies." She said "well, this is not the same thing as an 'allergy', plus for some reason we've been seeing an increase in people with these problems. Let's do the tests."

So here I am. I guess I don't have any specific questions at the moment (since a lot of what I might have asked has already been answered by someone on this board... :) ) Except I would like to know about traveling, since summer is coming up. But I'll ask that in a new thread so the subject title matches what the post is about.

Thanks everyone for all the wonderful advice! It's SO overwhelming at the moment, but so worth it. Even in just the short time I've been trying to stop the gluten I feel better. Not back to normal yet, but definitely better. B)


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ravenwoodglass Mentor

Welcome. I agree your doctor is a 'keeper'. Traveling can be tricky so ask any questions you need to. I will be traveling in the fall to my DD wedding and we are getting me a room with a kitchenette. That way for the most part I can bring my own food. Ask any questions you need to. I hope you heal quickly.

quincy Contributor

Hello everyone. I'm new here, and have been reading all the posts for the past several days. I've got a "gluten-free" notebook and I've been taking good notes with all your helpful advice. My story is that I suddenly, about three months ago, got all the intestinal symptoms that you all have described. I thought I'd eaten too much fiber the day before, because I had added all-bran to my morning cereal, thinking I hadn't been eating enough fiber. Then I started getting bad headaches (I never get headaches), and fatigue, and weakness in the morning, and bloating. I finally went to the doctor, thinking I had colon cancer (a worrier by nature, lol) even though most of those symptoms are not present in colon cancer. The first thing she said to me was "okay, sounds like a gluten problem to me...either that or lactose, or both." (after reading about some of your problems in getting diagnosed I'm thinking that this doctor is a keeper!) I said "but I've never had allergies." She said "well, this is not the same thing as an 'allergy', plus for some reason we've been seeing an increase in people with these problems. Let's do the tests."

So here I am. I guess I don't have any specific questions at the moment (since a lot of what I might have asked has already been answered by someone on this board... :) ) Except I would like to know about traveling, since summer is coming up. But I'll ask that in a new thread so the subject title matches what the post is about.

Thanks everyone for all the wonderful advice! It's SO overwhelming at the moment, but so worth it. Even in just the short time I've been trying to stop the gluten I feel better. Not back to normal yet, but definitely better. B)

I am also recently dx'd. too bad I didnt have a good doctor like you did to suspect this immediately.

I can tell you that I also thought I had cancer, and that axniety has still not gone. i am taking klonapin in small doses if the anxiety gets really bad. still have symptoms also. they say it takes time.... sounds like you are already doing better. best to you...!

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    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
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      @par18, no, Scott's use of the term "false negative" is intentional and appropriate. The "total IGA" test is not a test used to diagnose celiac disease per se. The IGA immune spectrum response encompasses more than just celiac disease. So, "total IGA" refers to the whole pie, not just the celiac response part of it. But if the whole pie is deficient, the spectrum of components making it up will likely be also, including the celiac disease response spectrum. In other words, IGA deficiency may produce a tTG-IGA score that is negative that might have been positive had there not been IGA deficiency. So, the tTG-IGA negative score may be "false", i.e, inaccurate, aka, not to be trusted.
    • RMJ
      This may be the problem. Every time you eat gluten it is like giving a booster shot to your immune system, telling it to react and produce antibodies again.
    • asaT
      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
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