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carrotraisincake

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carrotraisincake Newbie

My family has tried to tell me for a couple years that I might have celiac. I always disagreed, as did my doctor, but I'm reconsidering the situation now. I've had unbearable itchiness on my arms, thighs, legs, ankles, and feet for about two months, which, as I understand it, is lower on the list of celiac symptoms. I wouldn't match it to celiac if it weren't for the other symptoms that I've had for years:

-I've had stomach pain and diarrhoea for most of my life, but it's got much worse in the past couple years. I saw a GI doctor and had a fluoroscopy done this past fall, but nothing showed up.

-Lately, I've had more constipation.

-I'm anemic (iron + b12).

-I've been especially tired during the day for most of my life, even when I'm taking iron and getting b12 shots.

-I was diagnosed with depression 10 years ago.

-I've had anxiety for about 5 years (and I've been agoraphobic for 3).

Also, my mom has Type 1 Diabetes and my dad has Fibromyalgia and IBS.

Could all of these symptoms be coincidences or could it be celiac?

It will take about a month before I can see my doctor and at least another month before I can get tests done and see the results. Should I try doing a gluten-free diet before this to see if it helps? How many weeks of eating gluten-free does it take to see any results (or a lack of results)?

Thanks for any help!!!


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Wolicki Enthusiast

My family has tried to tell me for a couple years that I might have celiac. I always disagreed, as did my doctor, but I'm reconsidering the situation now. I've had unbearable itchiness on my arms, thighs, legs, ankles, and feet for about two months, which, as I understand it, is lower on the list of celiac symptoms. I wouldn't match it to celiac if it weren't for the other symptoms that I've had for years:

-I've had stomach pain and diarrhoea for most of my life, but it's got much worse in the past couple years. I saw a GI doctor and had a fluoroscopy done this past fall, but nothing showed up.

-Lately, I've had more constipation.

-I'm anemic (iron + b12).

-I've been especially tired during the day for most of my life, even when I'm taking iron and getting b12 shots.

-I was diagnosed with depression 10 years ago.

-I've had anxiety for about 5 years (and I've been agoraphobic for 3).

Also, my mom has Type 1 Diabetes and my dad has Fibromyalgia and IBS.

Could all of these symptoms be coincidences or could it be celiac?

It will take about a month before I can see my doctor and at least another month before I can get tests done and see the results. Should I try doing a gluten-free diet before this to see if it helps? How many weeks of eating gluten-free does it take to see any results (or a lack of results)?

Thanks for any help!!!

It certainly sounds like you could have celiac or gluten intolerance. I had the unbearable itching too, which has since gone away! If you are going to be tested, you must stay on gluten for it to be accurate.

One thing to remember is that testing is not foolproof. False negatives are very common. You can have gluten intolerance and never test positive, either by blood or biopsy.

The time it takes to feel better varies by person. I felt immediately better within 3 days, but then developed some secondary food intolerances, which took a while to figure out. Now, 6 months later, I feel like a new person! I've heard that if you've been sick for a long time, it may take longer to heal.

Whatever you decide to do, there is some great collective wisdom on this site to help get you through. good luck!

Kathleen Smith Contributor

My family has tried to tell me for a couple years that I might have celiac. I always disagreed, as did my doctor, but I'm reconsidering the situation now. I've had unbearable itchiness on my arms, thighs, legs, ankles, and feet for about two months, which, as I understand it, is lower on the list of celiac symptoms. I wouldn't match it to celiac if it weren't for the other symptoms that I've had for years:

-I've had stomach pain and diarrhoea for most of my life, but it's got much worse in the past couple years. I saw a GI doctor and had a fluoroscopy done this past fall, but nothing showed up.

-Lately, I've had more constipation.

-I'm anemic (iron + b12).

-I've been especially tired during the day for most of my life, even when I'm taking iron and getting b12 shots.

-I was diagnosed with depression 10 years ago.

-I've had anxiety for about 5 years (and I've been agoraphobic for 3).

Also, my mom has Type 1 Diabetes and my dad has Fibromyalgia and IBS.

Could all of these symptoms be coincidences or could it be celiac?

It will take about a month before I can see my doctor and at least another month before I can get tests done and see the results. Should I try doing a gluten-free diet before this to see if it helps? How many weeks of eating gluten-free does it take to see any results (or a lack of results)?

Thanks for any help!!!

My main symptoms were headaches/anxiety/panic/bloating/constipation since I was around 13 years old, now I am 34. I went gluten free in April (with some mistakes) and my headaches are gone. Bloating gone. Constipation I still strugg with. Anxiety is fine, although I am still 10mg of meds for that. I wanted to give myself more time to heal before I tackle going off that.

Wait till you see the doctor and then if you do have Celiac or a gluten sensitivity this site will help. Everyone heals at different times. My headaches were almost immediate.

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    • trents
      Keep us posted and let us know the results of the biopsy. Your case is atypical in a way in that you have this high DGP-IGA but normal TTG-IGA so knowing how it turns out will give us more data for similar situations that may be posted in the future. 
    • Skg414228
      Fair enough! I very easily could have misread somewhere. Celiac is very confusing lol but I should know in a little over a month what the final verdict is. Just thought chatting with people smarter than myself would get me in the right mindset. I just thought that DGP IGA was pretty high compared to some stuff I had seen and figured someone on here would be more willing to say it is more than likely celiac instead of my doctor who is trying to be less direct. She did finally say she believes it is celiac but wanted to confirm with the biopsy. I did figure it wouldn't hurt seeing what other people said too just because not all doctors are the best. I think mine is actually pretty good from what I have seen but I don't know what I don't know lol. Sorry lot of rambling here just trying to get every thought out. Thanks again!
    • Scott Adams
      Yes, these articles may be helpful:    
    • trents
      No, you don't necessarily need multiple testing methods to confirm celiac disease. There is an increasing trend for celiac diagnoses to be made on a single very high tTG-IGA test score. This started in the UK during the COVID pandemic when there was extreme stress on the healthcare system there and it is spreading to the US. A tTG-IGA score of somewhere between 5x and 10x normal is good enough by itself for some physicians to declare celiac disease. And mind you, that is the tTG-IGA, not the DGP-IGA. The tTG-IGA is the centerpiece of celiac antibody testing, the one test most commonly ordered and the one that physicians have the most confidence in. But in the US, many physicians still insist on a biopsy, even in the event of high tTG-IGA scores. Correct, the biopsy is considered "confirmation" of the blood antibody testing. But what is the need for confirmation of a testing methodology if the testing methodology is fool proof? As for the contribution of genetic testing for celiac disease, it cannot be used to diagnose celiac disease since 40% of the general population has the genetic potential to develop celiac disease while only 1% of the general population actually develops celiac disease. But it can be used to rule out celiac disease. That is, if you don't have the genes, you don't have celiac disease but you might have NCGS (Non Celiac Gluten Sensitivity).
    • Skg414228
      Okay yeah that helps! To answer your last bit my understanding was that you need to have multiple tests to confirm celiac. Blood, biopsy, dna, and then I think symptoms is another one. Either way I think everything has to be confirmed with the biopsy because that is the gold standard for testing (Doctors words). You also answered another question I forgot to ask about which is does a high value push to a higher % on those scales. I truly appreciate your answers though and just like hearing what other people think. Digging into forums and google for similar stuff has been tough. So thank you again!
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