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Dxed In 2003. Did Diet For Awhile.

Guest missyflanders

By Guest missyflanders
in Post Diagnosis, Recovery & Treatment of Celiac Disease

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Guest missyflanders
Guest missyflanders
Posted

It did not help at all. Last November, I quit eating gluten free. I have not been sick or gassy etc. I have found that I am allergic to corn, probably why I had such problems on the celiac diet since I subsituted with a large amount of corn products. I have been monitoring my iron levels, which are steady. I tested negative with blood work last September, despite cheating many times. I am not feeling ill at all. My question is do I NEED to go back on the diet or could they have been wrong at the start. I had a biopsy and bloodwork done. Thanks for any help. My question stems from starting some medications that I want make sure are absorbed correctly.

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angel-jd1 Community Regular
angel-jd1
Posted

You were diagnosed by biopsy and bloodwork in the beginning??

-Jessica :rolleyes:

tarnalberry Community Regular
tarnalberry
Posted

If your diagnosis included a biopsy and bloodwork, then no, they weren't wrong. False positives are virtually unheard of - barring lab mistakes confusing your results with someone else. The problem is that a lot of celiacs are asymptomatic - you don't feel the pain, but your intestines will still be getting damaged, even if it's slowly. Not everyone reacts the same way, so testing how you're doing by checking your iron levels really may not be enough, and even the blood work may not come back with a positive if you're not eating a fair amount of gluten and don't have a lot of damage. The problem is, if you keep eating gluten, you will take a number of years off your life (I think the number's something around 10, on average), and you may find that you start experiencing subtle (or not so subtle) problems later.

KaitiUSA Enthusiast
KaitiUSA
Posted

If you were diagnosed you have it......

They would not be wrong with their original diagnosis...for them to catch celiac they deserve a pat on the back.

Of course being gluten free will cause you to have a inaacurate blood test even if you cheated...you need to be solidly on gluten for a good 3 months to get accurate results. You need to be eating a lot of gluten while being tested.

Whether or not you have symptoms you are getting the damage. You put yourself 40-100 times more likely to get cancer and other serious complications. Food is not worth your life. You most definitely need to be gluten free.

You also have to check lipsticks, etc to ensure you are completely gluten free.

Guest nini
Guest nini
Posted

If you had been dx with biopsy and bloodwork then it is positive. You can't have a false positive. You can have false negatives, especially if tested while consuming little or no gluten.

There are many celiacs who ALSO are allergic to many other foods like corn, soy, dairy, nuts, etc... my related food allergy is a sensitivity to meats raised with antibiotics and hormones and any foods processed with Nitrites and Nitrates.

It is extremely dangerous to just assume because the diet wasn't helping you, that the Dr's may have been wrong about the celiac in the first place.

My advice is to GO BACK to the dr. that diagnosed you in the first place, and let them know the diet didn't help, your celiac sprue could be unresponsive to the diet, and it could be just because you are also allergic to corn. OR it could be an other underlying MORE SERIOUS condition. You will need to consult with a nutritionist that is extremely knowledgeable about not only celiac but other food allergies. You need to be tested for food allergies to confirm that THAT is indeed what is going on with corn, and that there aren't other things you are also allergic to.

KaitiUSA Enthusiast
KaitiUSA
Posted

You could have been unresponsive due to the corn or because you often cheated.

celiac3270 Collaborator
celiac3270
Posted

A gluten-free diet will bring your levels down and make you appear normal, which is why people always say you should be on gluten for three months prior to testing to get a diagnosis of celiac.

It is natural for your antibody levels to go down on a gluten-free diet. If you go back to gluten, you may feel fine now, but your antibodies will eventually go back up and you'll feel sick again. Not to mention all the terrible complications you are predisposed to as a celiac on a gluten-filled diet.

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  • Posts

    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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