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Just Got Back From A Doctor Who Knew!
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7 posts in this topic

After over a year of doctors and specalists I met a doctor who actually said the words celiac!! After describing my symptoms he said its highly likely and that my body is in over reaction mode,given my possible celiac and other allergies (dust mites).My systemic response to gluten right now is 1: muscle tension jaw/neck/shoulders 2: cold extremities 3: heart rate elevated 4: fatigued 5: sinus flares .Then over a course of a few days to a week the symptoms decrease (if I don't eat gluten) and I start healing slowly .Any infiltration of gluten and it restarts,the longer I take between gluten ingestion the less the symptoms will hit if I do consume a small amount. He said I may also have adrenal fatigue? Because its been a year solid of non stop symptoms plus all my regular allergies (dust mites/pollen) amplified 10fold.So my body is exhausted hence why coffee affects me negatively.He said once the adrenal fatigue is fine coffee can come back into diet no problem.He also said I could consume gluten and come back for official tests but I just can't take another beating like that on my body I need rest badly.Thank you Xmas snacks for that !!!! Anyways does this make sense to some of you? He did take the usual thyroid/ blood cell tests and also a cortisol test to check adrenal functions.

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That's great you found a doc who "gets" you! Sounds like you know you can't eat gluten.... like me, there is NO way I can eat enough gluten to go for a biopsy, and luckily my doc also said my strong reaction and a few other signs and tests were good enough for him.

My next step is going to be testing for nutritional deficiencies, will you be doing that too?

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He did that today all b12 ,zinc iron magnesium etc although I already heavily boost myself daily I'm curious to see the results

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So the doctor didn't order blood tests? It's a really quick blod darw that any lab could do... If you want to check if it's celiac (vs Non-celiac gluten intolerance - which has the same symptoms but not the intestinal damage) you should request the blood tests and do them in the next day or two before the gluten really starts to clear from your body.

The most common tests are:

ttg IgA and IgG

total serum IgA

EMA IgA

DGP IgG and IgA

Did he check your TPO Ab, Free T4 and Free T3's as well as your TSH? TSH doesn't always tell the whole story, and thyroid problems are common with adrenal fatigue.

I am glad you have a doctor who is willing to look at the current thinking about these issues; many docs won't admit adrenal fatigue exists and think you can only have celiac if your gut hurts and you get malnourished and skinny. Sounds like a good one. :) Best wishes with the gluten-free diet (after you are satisfied with any testing, or lack there of that is).

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Very nice that you found a doctor that looked at the puzzle and suggested Celiac Disease - this warms my heart.

I agree with Nicole - get all the blood tests before removing gluten - this data may become very valuable to you.

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It had been almost two weeks since I ate gluten he didn't want to waste my money on a test,he gave me two options 1: go eat gluten for at least two weeks snd come back to test or try gluten diet .He also said my symptoms match up to s milk allergy as well (not intolrence,but allergy).Im not sure which is worse celiac or milk allergy? I had a gluten intolrencr test done this summer but it came back neg (not celiac test).And I was eating gluten everyday before that test. He did do thyroid test ,cortisol test,vitamin deficiency test on Wednesday and iron test, so I'm waiting for those results

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If gluten is making you ill and you cannot tolerate consuming for testing -- I still think the Celiac panel has value -- better now than when you have been gluten-free for longer.

Many folks question the need to remove gluten as time passes - this is why I think it important to get tested if at all possible. You may be negative, may be possitive, but the longer you are gluten-free you will definitely test negative.

Edited by GottaSki
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    • Hi Kasia2016, Yes, celiac disease symptoms can vary widely.  Some people have no symptoms, we call that silent celiac.  Other have difficulty walking (gluten ataxia), skin rashes (dermatitis herpetiformis), and thyroid disease (Hashimoto's thyroiditis).  The list goes on and on.  GI symptoms can vary widely too, from mild symptoms at times to severe symptoms.
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    • That's great to hear you are feeling better Nightsky.  I really think when our GI systems are in distress already that it doesn't take much to set off symptoms.  Once I eliminated the other foods that cause me symptoms that helped a lot too.  And added some extra vitamin D to my diet and selenium. Many of us have developed reactions to other foods besides gluten and need to avoid them to keep symptoms at bay.  For me nightshades, carrots, soy, dairy, and celery all cause symptoms.  It took me awhile to figure out all those food culprits, but it made a big difference getting them out of my diet. But we are all individuals, and our bodies react individually.  So you may or may not have additional food intolerances develop. Celiac is one of those life journey things and we learn as we go.  Just keep the bottle of aspirin handy!
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