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Finally An Answer! I Have Celiac


Guest ShannonL

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Guest ShannonL

OK just left the dr. I DO have celiac. I am beginning this journey AGAIN...I was dx 4 years ago then told I didnt have it. Now I do for sure. Anyway....here are the first of many questions. I dont have issues with my skin...should I still not use make-up that may contain gluten? What is a good book to start with? Is there a celiacs for dummy's???? LOL if so I need it.

Should I just go basic fruits and vegetables for 2 weeks and then add dairy and other somewhat processed stuff? Any advise would be appreciated. I am exhauseted and need some hand holding. I have a 11 mo who is IGg4 deficiant and she is sick ALL the time and I dont sleep! ARRRR I hoping this fod lifts. MY dh told me last week that I am going to be something when I am 60. Now maybe I will get my brain back.

Shannon

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aikiducky Apprentice

It's a good ideato start with simple foods. You could do vegetables, fruit, meat, fish, eggs, rice, for a couple weeks and then see how you feel. That way you don't have to spend so much time reading labels right away.

I hope you start to feel better soon. :)

Pauliina

gadgetgirl Newbie

Shannon,

There actually is a "Living Gluten-Free for Dummies" book available. It is worth reading - I found it combined information from a lot of sources into one book. It would be a good place to start.

So is the advice to just go with a basic diet for the first few weeks. In my case, I have intolerances that go beyond gluten and it was frustrating the first month or so to figure out everything that I was intolerant to. It would have been much simpler if I had started out very simple and then started adding back foods.

I hope you start feeling better soon.

Regina

SchnauzerMom Rookie

I have the Gluten Free for Dummies book and it has helped me a lot. Tremendous amount to information in it. I learned about this website from that book.

happygirl Collaborator

Check out the book listed in my signature. It is written by one of the top Celiac physician's and researchers and was just published this year. While much still is unknown about Celiac, it is a great resource for the information that is currently out there. I HIGHLY recommend it. you can get it from amazon or any other bookstore.

Feel free to ask any and all questions. Celiac is strange. Remember that Celiac is a genetic disorder...so your children could have it or could develop it. They suggest that ALL first degree relatives are tested via the full blood panel (Open Original Shared Link), including parents, siblings, and children. However, in children under two, the testing is somewhat unreliable at this point and often can miss Celiac.

Also, just because someone in your family is tested now, doesn't mean that they can't develop it later (like you developed it later...I "got" it in my early 20s).

The only "cure" for Celiac is a STRICT gluten free diet....it will take time to heal, so make sure you have patience. It took me months to feel somewhat normal, but I felt a difference within days. Celiac is often referred to as a medical chameleon because of its multitude of different symptoms, and course of the disease.

We are here to help! Best of luck!

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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
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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