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Just Got Back From A Doctor Who Knew!

Liquidceliac

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Liquidceliac Rookie
Liquidceliac
Posted

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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gatita Enthusiast
gatita
Posted

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?

Liquidceliac Rookie
Liquidceliac
Posted
  • Author

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

nvsmom Community Regular
nvsmom
Posted

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).

GottaSki Mentor
GottaSki
Posted

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.

Liquidceliac Rookie
Liquidceliac
Posted
  • Author

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

GottaSki Mentor
GottaSki
Posted

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.

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    • knitty kitty
      Son's legs shaking

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      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
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      High TTG-IgG and Normal TTG-IgA

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    • trents
      High TTG-IgG and Normal TTG-IgA

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    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
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