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Do You Think I Am Celiac?


Sparkle1988

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Sparkle1988 Rookie

Hi everyone am new!

My symptoms started a few years back and they have just gradually got worse - feel like rubbish everyday now. Here are my symptoms:

Diarrhea

Constipation

Bloating

Stomach cramps

Indigestion

Gas

Heartburn

Joint pains

Fatigue

Muscle cramps

Headache

Feeling lightheaded

Lack of concentration

Anaemia - low iron and b12

I had a blood test for celiac which came back negative. I'm now waiting on a biopsy appointment. What do you all think?

Thanks


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MySuicidalTurtle Enthusiast

There are loads of symptoms for Celiac disease and those are some of them. Have you tried not eating gluten?

Sparkle1988 Rookie
There are loads of symptoms for Celiac disease and those are some of them. Have you tried not eating gluten?

A couple of symptoms I forgot to put on my first post are: breathlessness (tightening feeling in throat and chest), swollen gland in my neck which has been there for over 2yrs (the doctors dont know why its been there so long as apparantly its just an indication that I am 'run down'), I also have itchy skin which really annoys me - especially at night.

I have been going to the doctors with those symptoms for around a year and they told me I have IBS. All of the tablets they gave me for IBS have not helped me. I dont know what everyone else thinks, but I think IBS is just something you are told you have if the docs dont actually know why you are feeling that way.

I've never cut gluten out before but the doc says to keep eating it the now as I have a biopsy coming up in the next couple of months.

By the way, how common are negative blood tests in people with celiac? I'm not sure exactly what tests I had for celiac but as I said before, they came back negative.

Thanks for your help.

QueenOfPain Rookie

Yes, I agree that doctors throw out an IBS diagnosis everytime they're stumped. It sounds like gluten could be the culprit for you. Definitely keep eating gluten if you're going to have the endoscopy. It is possible to have a false negative on the blood test. It is also possible to have a false negative biopsy. (Which is what happened in my case.)

I would suggest that if your biopsy comes back negative, and your doctor can't come up with any other explanation for what is troubling you... just try the gluten-free diet. It was hard at first, especially since I went through the withdrawal (my GI symptoms actually got worse). But about 3 months later I started feeling so much better. My blood tests had been coming back postive and after going gluten-free it came back negative. I'm so glad I stuck with my "gut" instinct and ignored my doctor in the beginning.

Sparkle1988 Rookie
Yes, I agree that doctors throw out an IBS diagnosis everytime they're stumped. It sounds like gluten could be the culprit for you. Definitely keep eating gluten if you're going to have the endoscopy. It is possible to have a false negative on the blood test. It is also possible to have a false negative biopsy. (Which is what happened in my case.)

I would suggest that if your biopsy comes back negative, and your doctor can't come up with any other explanation for what is troubling you... just try the gluten-free diet. It was hard at first, especially since I went through the withdrawal (my GI symptoms actually got worse). But about 3 months later I started feeling so much better. My blood tests had been coming back postive and after going gluten-free it came back negative. I'm so glad I stuck with my "gut" instinct and ignored my doctor in the beginning.

Hi

I will wait for my biopsy, then maybe try the gluten free diet maybe even before I get my test results back. I was wondering, if you are one that has symptoms of diarrhea usually once or twice a day and also regular constipation, is it normal to have some days or weeks where you don't get diarrhea and sometimes dont get constipation? I have had constipation a few times in the last week but no diarrhea at all which is great! All my other symptoms have stuck during this time though.

I'm just clueless as to whether it could be Celiac or not. Is it possible to have it when no-one in my family (as far as I know) has been diagnosed with Celiac? There are a couple of people in my family who have 'IBS' but have had negative blood tests for celiac (they haven't had biopsies).

Thanks

QueenOfPain Rookie

As for the symptoms--I didn't experience a lot of constipation (except for in the beginning when I was a kid.) As for the diarrhea, it would come and go. I might have a good week and then have a bad week or a bad month. I wouldn't usually have diarrhea every single day, but when I did it was bad. I might have to run to the bathroom four or five times. =(

And yes, it is possible for you to have it even though no one else in your family has been diagnosed. My dad told me that there have been many people on his side of the family that have had gastrointestinal problems, but no one has ever mentioned Celiac. In fact, his sister has been diagnosed with IBS. (But I suspect she might really have Celiac.)

If you do decide to try out the gluten-free diet keep in mind that some people go through withdrawals in the beginning. My gastro symptoms actually got worse after I began. It took 3 months for me to feel better. Best of luck to you! Hang in there!

Sparkle1988 Rookie

Well I suffer both diarrhea and constipation (mainly diarrhea), but ive had a good couple of weeks as ive had no diarrhea and only constipation a few times. Most of the time diarrhea does bother me but like you were saying, I get good weeks where I don't get it at all.

My aunt has the exact same symptoms as me (minus the diarrhea), so I think she is going for the biopsy at some point as well. I can't wait to get mine done, just want to know! It would be great to be able to go out for meals and nights/days out and not worry about how ill I might feel.

Also, what exactly happens during the biopsy? Is the anesthetic an injection? I hate injections so I'm a bit worried about that, but I don't want to have just the throat spray on it own.

Thanks


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QueenOfPain Rookie

They performed an endoscopy and a colonoscopy at the same time with me--so they had me knocked out for the whole procedure. I want to say they had me hooked up to an IV and maybe they delivered the anesthesia through the same line... I can't remember--it was a year ago. It wasn't too bad. And after they were finished I was just kind of groggy and tired the rest of the day--no biggie.

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      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
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