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Maybe Not Celiac?


minton

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minton Contributor

Okay so yes my symptoms since birth fit celiac disease, but given my genetic history (to date nobody in my family even carries the genes much less has symptoms), and a few other things, I'm wondering if I should try reintroducing gluten?

Here are things bringing me to wonder:

-There are major case studies about ingesting gluten via dust and skin contact. I owned a horse the last 9 years of my life and I hand mixed his grain (gluten), practically rolled in barn hay and dust with him, and honestly, I was healthier before he passed away, forcing me to get out of the horse world.

-My symptoms are back and I'm sick again like hell but my only diet change is my inability to afford my raw milk for the last 3 weeks or so. I am still gluten-free though.

-I was never tested. No biopsy, blood, or genetics. The doctor just took my medical history and said it fit celiac so I should start the diet.

-The genetics of course

-My parents and I cook using the same utensils. They eat gluten, I don't and the cross contamination has never been an issue. Ever.

-my symptoms started coming back after i returned dairy to my diet, but disappearred again when I switched to raw milk. My initial start going gluten-free was also dairy free.

Is it possible I have a dairy allergy and not celiac? Or something else that acts similar to celiac? I plan on asking my doctor at next visit but I would love opinions. Should I try adding gluten back in but stick to only raw milk products? Any suggestions or ideas would be appreciated.

Sidenote: I'm not anti-celiac, but it's been 2 years and I'm still pretty sick...


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ravenwoodglass Mentor

I noticed you have DH is that still active? If it is then you may not be as safe sharing a kitchen with gluten eaters as you think you are. You say you are sure you are not being glutened but if the DH is active you are.

minton Contributor
I noticed you have DH is that still active? If it is then you may not be as safe sharing a kitchen with gluten eaters as you think you are. You say you are sure you are not being glutened but if the DH is active you are.

As I said in the DH thread, it was said it probably was DH. I have not been eating at home too much lately. When I do, it hasn't been cooked. I will thaw out gluten-free brownies on the counter and eat the or something but I haven't been home enough to cook.

ShayFL Enthusiast

If you still have the DH or it is coming back....get it biopsied. Super easy and not painful. 10 minutes at the Dermo. Genes mutate. You could be the first one if EVERYONE else has been genetically tested in your family and dont have Celiac Genes. PLUS a very small % of people have GOLD STANDARD DX Celiac without either DQ2 or DQ8. So I wouldnt rule it out just yet.

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    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
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    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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