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mmmSmores

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mmmSmores Apprentice

I was also diagnosed in mid-October and I am not feeling much different. I live with my boyfriend who is semi-assuming a gluten free lifestyle. We are very careful about the non-gluten-free food he eats. I never would have thought about wooden spoons.

I was diagnosed by a blood test, but what led me to the blood test was an endoscopy (done for other reasons) and they said the results indicated taht Celiac was a possibility. I read all of the info on this forum that appears under peoples name about what they have and I don't understand. All my doctor said was that I have it and I need to go on a gluten-free diet.

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ShayFL Enthusiast

Do you have copies of your actual lab work? What it sounds like is they found damaged villi or flattened villi in your intestines (gold standard sign of Celiac), but they did the bloodwork to make sure (a few other things can damage the villi). Your bloodwork was positive also. YOU ARE CELIAC.

You need to be 100% gluten-free to heal. And most have to cut out dairy for a few months as well until symptoms subside.

You had symptoms right? Why did you have an endoscopy?

The One Apprentice

Hi and welcome! This has been the most helpful website for me regarding gluten.

It's great that you finally got your diagnosis, I never got a final diagnosis but every time I eat a tiny amount of gluten I'm sick for days, that's enough diagnosis for me!

Healing your intestines is going to take a loooong time, and so will everything else, so it is completely normal that after a month of being gluten free you still don't feel a lot better, but stick to it and it wil be much worth it. A lot of people here can tell you how bad they were (and I include myself in that list) before being gluten free, and all that damage won't go away too fast, I've been gluten free for about a year and some months and I'm stilll battling symptoms and damage that will never be undone like my neuropathy, diabetes, short stature, bone issues/pain, anxiety.

Make sure to eat fresh foods those are the best at the beginning, as processed foods will put too much stress on your digestive system, veggies, fruits, grains, meats, fish and all those things are the best.

All thos things you see under people's signatures are conditions that come hand in hand with Celiac, a lot of people never understood why they had them and Celiac finally offers an explanation and hopefully a solution for many, so stick around this forums, it will be a lot of help and support and stick to the diet and you will see results ;)

AJ

sbj Rookie

Hi Smores:

You sound a bit like me - not sure because you don't give much detail. Perhaps you could flesh the first post out with some more info about any symptoms you have? At any rate, I was also diagnosed after getting an endoscopy for something completely different. I had no outward symptoms whatsoever but my biopsy showed damage and the bloodwork was positive and I have the DQ2 hetero gene, so you and I both have celiac disease.

I am following the diet and I haven't noticed any changes. But that doesn't mean you should cheat. Any gluten you ingest can damage your small intestine and that can lead to problems (eventually) all over the place. I found that my GI didn't give the best advice. Like you, he simply told me to follow the diet and that was it. (He has since reminded me that it is very important to follow the diet even if I don't have symptoms.) I got better advice from my regular intern who scheduled various tests for vitamin and nutritional deficiencies and also got me in for a bone density check.

But the best advice I got, by far, was from a nutritionist/dietitian. Depending on your health plan, I'd try to get a referral to a dietitian. He/she can explain how to follow the diet, help you with labels, give you some good, practical advice (wooden spoons, dairy, natural flavorings, etc), and explain why it is important for you to follow the diet even if you don't have many symptoms. Bring your boyfriend to listen in.

Look at it this way - I need to pop a fish oil tablet each day for my cholesterol - even though I have no symptoms and it doesn't seem to do a thing.

BTW: Wooden spoons are a no-no. Get new ones and don't cross contaminate. Dairy is fine for me but maybe not for you. Natural flavorings depend on whether I have a reaction - check with the mfr, if possible. Never overdo anything you aren't sure about - nothing to excess and don't tempt fate.

ravenwoodglass Mentor

Welcome to the board. Read as much as you can here and ask any questions you need to. It can take a while to heal and you may need to cut out dairy products for a while. The villi that produce the enzymes to digest dairy are the same ones damaged by celiac. Many of us can add dairy back in after we heal. Do check your makeup and toiletries and if you BF eats gluten or drinks a gluten beverage make sure he brushes his teeth before any kissing. Also try to eat as much whole unprocessed food as you can, it will help you heal the quickest. I hope you start to get some relief soon.

sickchick Community Regular

It takes most 2- 2 1/2 years to feel better. I have been gluten free since Oct 2007 and am not feeling much better!

hang in there toots! B)

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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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