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Celiac Or Not That Si The Question

SYBERBUNNI

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SYBERBUNNI Newbie
SYBERBUNNI
Posted

I will try to make this short as possible. I am 38 years old female. I have a Autoimmune disease called Hashimoto's. It causes alot of the same symptoms. But, like most autoimmune diseases the mimic each other. So anyways I go to a new endo Doctor. After looking at me & going over my symptoms he says that all my symptoms are not do to the hashimoto's. Turns and asks me if I have ever heard of Celiac disease. I then turn to my 10 yr. old Daughter Shes says I am Celiac (she has been on the diet for nearly 2 yrs. biopsy pos. first then blood positive). She never fit the standards for Celiac they found on a fluke trying to figure out what was wrong with her. I proceed to tell him that I have had a full blood work-up for celiac, which came back neg. He tells me that 20% of celiacs are neg; that they need a biopsy. I am concerned about this for a couple reasons. Jensen's ped gastro doc says that there is no chance I could have it because all my blood tests are neg. The other is that they do the biopsy and because i am mostly eating a gluten free diet because of my daughter it will come back with a false neg. Funny thing is we have no clue where Jensen's got Celiac came from in the gene pool.

I have stomach pain, Muscle cramps, general all over body aches, Headaches, hair loss, issues going to the bathroom. If you press my intestinal area it is tender. Severe what I thought was ovary pain on left side but the gyno doc can't find anything. I am vitamin d3 deficient (live in Michigan 1 in 3 is). Jensen is also low on vitamin d. A lot of these issues became stronger during my pregnancy with Jensen. The stomach pains have becoming worse over the past couple yrs. But, no where near as bad a Jensens were. Her first words were mommy, chocolate, tummy hurt.

It is to the point I hate eating because I know what is coming (period of time after eating can vary). But, I am always hungry. Yet, I feel like there is never any room to put the food because I am so full of you know what. I go this Thursday for the blood tests again.

If I eat a lot of gluten before then do you think it my show in my blood work. I believe this would work for the biopsy, eating high gluten diet over a longer period of time. All of these symptoms I can explain way to the thyroid issues. My Doctor is going to talk to an Gastro asst. of his it see what he thinks. What do you think the likely hood that it is celiac?

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cassP Contributor
cassP
Posted

Celiac & Hashimotos often go together!!!! not always- but it IS common. i have Celiac, my mom has hashimotos... i am getting my thyroid panel next week- i am 95% sure ive got the hashimotos too

YOU have a good doc- he knows his stuff- YES false negatives are common- around 20%. Do NOT listen to your daughter's pediatrician. SO MANY of us on here have had False negatives or inconclusive tests!!!!!! (my Antigliadin's were negative, and my TTG was LOW, but my EMA was positive, ive got 2 DQ8s, and now i have DH)->

your daughter inherited her celiac genes from you &/or her father-> so either or both you and her father have celiac/gluten intolerant genes. and often Hashimotos is related to those genes.

i would BET that you are Celiac. but you are correct that you are in a conundrum- Because- if you're mostly gluten free- than an endoscopy (with MULTIPLE biopsies) may be innacurate and a waste of your time.

your doc sounds pretty smart- discuss with him (or her) what you should do- because of your diet. and then regardless of what you do- you MAY need to consider going 100% Gluten Free for real.

good luck

T.H. Community Regular
T.H.
Posted

Yeah, I'd second that -

your doctor is knowledgeable, Jensen's is definitely NOT.

And also...even if the biopsy is negative, it might be worth you while to go gluten free anyway and see if it helps.

My daughter and son were tested after I was diagnosed. Daughter came back positive, son came back negative. I took them both off gluten, and they both got better. My son actually had more symptoms - so I was surprised he was negative - but no matter his tests, he's better off of gluten.

Could be that you are sensitive to it and it's affecting you without it testing as full blown celiac disease.

I know hashimoto's has a lot of the same symptoms, but I definitely have many that you mentioned (I had no gut pain, though)

---Muscle cramps, general all over body aches, Headaches, hair loss---

That was all me, too. But I never thought of them as symptoms, it was just getting old, or 'that's the way I am,' you know?

Since going gluten free, I have discovered that I have to be very gluten free to recover, or I still have problems, so most gluten free foods I still have to avoid.

sb2178 Enthusiast
sb2178
Posted

You could also get genetic testing, which would help clarify a little. Given you daughter has it, you probably have (a) gene(s), but sometimes the piece of paper helps.

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

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    • lizzie42
      Son's legs shaking

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      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

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