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Gp confirmed blood tests shows I am likely celiac. Please help

TheSootyShow
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TheSootyShow Apprentice
TheSootyShow
Posted

I had a text from my GP saying that my blood tests showed concerns over celiac after having multiple symptoms and being tested. She said she'd call me tomorrow, I am feeling so overwhelmed. Not sure the point of this, but just looking for some support. I don't know anyone that's celiac and I know very little about it. 

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Wheatispoison Newbie
Wheatispoison
Posted
2 hours ago, TheSootyShow said:

I had a text from my GP saying that my blood tests showed concerns over celiac after having multiple symptoms and being tested. She said she'd call me tomorrow, I am feeling so overwhelmed. Not sure the point of this, but just looking for some support. I don't know anyone that's celiac and I know very little about it. 

Hi there, one go through all your cupboards and go through EVERYTHING, anything that say 'contains gluten or wheat or barley or rye' give it away, anything that says 'may contain.... ' can be a bit hit and miss, it means the equipment used to make it also is used on gluten containing products, some cadbury chocolate is a good example safe to eat, but says 'may contain', eliminate all the obvious things, bread, pasta, jelly lollies, beer, most take away, and adopt a more meat veg salads and fruit type diet, also avoid 'hickory smoke flavour'. Also soy sauce, replace that with a gluten free one. Also check your ice cream, cheap ones tend to have wheat in them, You'll need to re-learn how to shop because gluten free items are scattered throughout different places in most supermarkets, but you'll find cookies wraps bread pasta etc, also very expensive, but worth it you'll soon realise how terrible you've felt for many years..... 

trents Grand Master
trents
Posted
(edited)

Celiac disease is not an allergy to wheat or gluten. It is an autoimmune disorder. Your immune system mistakenly identifies the gluten in wheat, barley and rye as an invader as soon as it comes in contact with the mucosa that lines the small bowel, or the "villi" as we call them. The immune system attacks the gluten but in the process the inflammatory reaction causes damage to the villi that over time greatly reduces the surface area needed to absorb nutrients from our diet. Over time, this results in nutritional deficiencies that can cause other health issues such as osteopenia/osteoporosis, anemia, and even neurological damage. The inflammation in the villous lining of the small bowel may or may not produce abdominal discomfort or diarrhea. Many celiacs do not "feel anything." We call them "silent" celiacs. Anyway, the inflammation produces antibodies that can be detected in the blood and this is the test you have just had done. This is stage 1 of diagnosing celiac disease. If your antibody levels are very high (10x normal), your physician may declare a diagnosis of celiac disease and dispense with the second stage of diagnosis described in my next paragraph.

Your physician may refer you to a GI doc for the purpose of performing an endoscopy with biopsy of the small bowel to physically examine the damage to the villi by a lab under a microscope in order to confirm the results of the blood antibody testing. So, until all tests are performed you should continue to eat regular amounts of gluten.

Edited by trents
Scott Adams Grand Master
Scott Adams
Posted

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

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    • trents
      R there any organizations that help with financial costs of food?

      By trents · Posted

      Moms Across America for one. Here's the article that kicked off long thread and more than one thread on Celiac.com this past summer:  Our community feels the testing needs to be tightened up. As of now, GFCO allows food companies to do self-testing and self-reporting. Testing is also done We strongly believe testing needs to be done more frequently and there needs to be drop in, unannounced testing by the FDA and certification groups.
    • CiCi1021
      R there any organizations that help with financial costs of food?

      By CiCi1021 · Posted

      What celiac watchdog groups have looked into what you mentioned? Thanks.
    • trents
      R there any organizations that help with financial costs of food?

      By trents · Posted

      Welcome to the forum, @CiCi1021! Well, to begin with, most of us have found it isn't necessary to buy a lot of specifically labeled "gluten free" or "Certified Gluten Free" prepackaged food items as long as you are willing and able to cook from scratch. This is especially true since testing by celiac watchdog groups has cast some serious doubt on how consistently food companies are actually meeting gluten free and certified gluten free standards. It's probably just as effective and certainly less expensive to buy naturally gluten free mainline food products such as fresh meat, vegetables and fruit and prepare your own meals. The only major exception to that in my experience is loaf bread. It's very difficult to make your own gluten free bread products and have them come out decent with regard to texture. The major food companies have invested a lot into that component and have come up with some pretty good stuff that's hard to duplicate for yourself.
    • CiCi1021
      R there any organizations that help with financial costs of food?

      By CiCi1021 · Posted

      Struggling with costs of all the special food.  Are there any organizations out there that will assist with costs? 
    • trents
      Should I get a second opinion?

      By trents · Posted

      I would ask the GI doc about the elevated IGA score of 401. That one is what we commonly refer to as "total IGA" and also known as "Immunoglobulin A (IgA)". It could be nothing but it can also indicate some other health issues, some of them serious in nature. I would google potential causes for that if I were you. Also, if there is a chance the GI doc will want to do more testing for celiac disease, either antibody testing or an endoscopy with biopsy, you should not cut back on gluten consumption until all celiac disease testing is done. Otherwise, you will invalidate the testing.
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