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Old 08-17-2010, 06:50 AM   #1
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Could it be Celiac?

Most of my adult life, I've had minor, vague aches, pains, headaches, and even mild tingling in feet and hands. Over time I developed arthritis in my right ankle and knee with no specific cause aside from (according to ortho) a sprain or minor fracture in my ankle that probably never healed right.

I have low-normal B12 and calcium levels (normal range but on the low end) despite a normal or above-normal intake. Whenever I eat, especially if it's a bread or pasta-rich meal, I feel very bloated for hours afterwards and get quite gassy and I often "feel like" I should have a BM soon but sometimes don't "go" for 12 hours or more after that. I've never had specific issues with watery stools or constipation (outside a normal person's experience) but I get the bloated gassy feeling a lot.

I get a generalized ache in the muscles around my abdomen, legs, and upper thighs at times, and have minor, but annoying, hip, knee, and even elbow pains that seem to have no identifiable cause.

My mother has IBS, and recently was told to get tested for Celiac which gets me thinking that perhaps I actually have it...

 
Old 08-17-2010, 07:26 AM   #2
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Re: Could it be Celiac?

More symptoms:

-On and off tailbone pain, unknown cause

-Occasional migraines (appear in clusters, I have a bunch for a month or two then none for a long time)

-Petichiae or similar on feet and shins last 2 yrs. No more have appeared but they are taking forever to fade.

 
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Old 08-17-2010, 07:48 AM   #3
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Re: Could it be Celiac?

Just ask for the blood test- that would be a good first step. I had really never even heard of Celiac until last week when I was told I had a positive blood test. I have been having weird symptoms since Oct 2009. None of mine were really digestive problems at all though. I have really bad upper left quadrant pain- especially on the rib cage. I have a hard lumpy thing on the left rib which I have been told is costochondritis. I also have really bad armpit pain in mainly the left underarm, sometimes right.

I have been to so many Dr’s, but the pain was getting worse so last week I decided to try a rheumatologist. She said she was going to test for a few obscure things and she called me the next day and said I came back positive for celiac. After doing some research on it, I realize I do fit some of the things- I have been anemic on and off since college, then I will take iron pills and my iron goes up, but then goes down again. My Ferratin is very low (5), I’ve always been gassy (I noticed it more when I eat “junk food”), and just last year I noticed my stomach was a bit more gurgly than normal, but these were so non specific I never thought they went together. I was reading that these things are symptoms of celiac. For me the main symptom is the left sided pain and that is what made me keep going back to the Dr. I have to have an endoscopy next week to confirm the blood test.

Do you have any autoimmune diseases in your family? My Dad has MS and has thyroid issues and my grandma on that side has RA. How old are you? I am 35. So, of course I am nervous that I've had this for a while and may have done some damage.

I found this site pretty helpful- http://www.aafp.org/afp/980301ap/pruessn.html

Good Luck!

Last edited by Stabevrian; 08-17-2010 at 07:49 AM.

 
Old 08-17-2010, 07:52 AM   #4
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Re: Could it be Celiac?

I'm 33. Male if you didn't catch that.

Autoimmune in family...well...my mom (age 58) has IBS and "probable Celiac" from what her gastroenterologist thinks. Also on my dad's side, his brother (my uncle) has RA. Grandmother has, and great-grandmother had ,Type II Diabetes. No MS, Lupus, or anything else.

 
Old 08-17-2010, 08:11 AM   #5
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Re: Could it be Celiac?

Oh yeah, I was reading that IBS a lot of times is diagnosed when it really is celiac. I would definitely suggest the blood test- I read that false negs are common, but not false positives. Have you tried the gluten free thing yet? I just bought a few of the foods over the weekend and they really aren't that bad, surprisingly!

You could try that diet for a couple weeks and see if you feel better? I have read sometimes you could start feeling better in days/weeks.

-Sara

 
Old 08-20-2010, 08:30 AM   #6
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Re: Could it be Celiac?

Seems odd that I'd be 60 lbs OVERWEIGHT if I am in fact a celiac though. And going gluten free if that is the case would probably make my weight loss journey moot, wouldn't it?

 
Old 08-20-2010, 09:31 AM   #7
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Re: Could it be Celiac?

That is an old way of thinking, I just read yesterday that 40% of adult celiacs are overweight at the time of diagnosis. The article was saying that a lot of Dr's don't test for that because they still have the old mentality of thinking a person has to be skinny to have celiac. If you Google overweight and celiac you will get some info.

It might not hurt to try the diet if you don't want to go to the Dr. Maybe try it for a month. Quite a few people say they start to feel better within days-weeks.

I am not expert on this, I just found out I have it, but I have been doing a lot of reading. I met with the GI Dr today and he told me that a lot of celiacs don't even get dx'd till they are in their 50's because they have atypical symptoms.

 
Old 08-20-2010, 10:32 AM   #8
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Re: Could it be Celiac?

One thing that made me curious was the fact that despite a diet that would suggest good (>800) B12 levels, my B12 back in March was only 407, which while "normal" is lower than it should be.

 
Old 08-20-2010, 12:11 PM   #9
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Re: Could it be Celiac?

Stabevrain,

Do you have dermatitis herpetiformis as well. Or do you know where I can find detailed information on this. What I thought were insect bites seem to be something else. I can be watching tv and an ITCHY bump will appear and then another and another. I have sores everywhere. This has been going on for months now.

 
Old 08-20-2010, 02:13 PM   #10
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Re: Could it be Celiac?

Quote:
Originally Posted by darisa View Post
Stabevrain,

Do you have dermatitis herpetiformis as well. Or do you know where I can find detailed information on this. What I thought were insect bites seem to be something else. I can be watching tv and an ITCHY bump will appear and then another and another. I have sores everywhere. This has been going on for months now.

Hi Darisa- No, I don't have that. I found these symptoms:
Dermatitis herpetiformis is usually extremely itchy. The bumps or blisters usually appear on the elbows, knees, back, and buttocks. In most cases, the rash is the same size and shape on both sides. Symptoms of dermatitis herpetiformis tend to come and go.

I've read (during my celiac research) that if you have DH you definitely have celiac. You can get a skin biopsy to confirm. Are yours symmetrical? I think the itchiness is key too, it says the itching cannot be overemphasized enough.

 
Old 08-20-2010, 02:27 PM   #11
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Re: Could it be Celiac?

Thanks again for your answer Stabev

Yes they are symmetrical. There like little circles of scabs that won't leave. Also new ones pop up everyday. I have them everywhere except knees elbows and butt. It looks like I have the chicken pox! The itching can become so bad that I'll just run cold water over my arms!!

Last edited by darisa; 08-20-2010 at 02:28 PM.

 
Old 01-27-2011, 01:08 PM   #12
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Re: Could it be Celiac?

Old thread bump time.

Since my original post, I have developed abdominal pain that again suggests IBS, and went to a gastroenterologist. Initial dx was probable IBS-A (I have a slight alternation between being SLIGHTLY constipated and having soft stool but never true diarrhea or constipation.)

However, the many other vague symptoms I have had, that are too transient and mild to really match anything else, I thought were worth mentioning. He feels that there is at least a reasonable chance that I may have celiac or some other gluten intolerance, so he ordered a few blood tests, IsA, CRP, ttg, complete metabolic. Also a colonoscopy since I reported blood once or twice, he did say he's "90% sure" it's a fissure or piles but wants to make sure.

I was worried about MS a while back, due to hand and foot tingling, but since my tingles, although they may persist in an off and on fashion for weeks or months, come and go many times over the course of a day and never seem to create any sort of motor skill deficiency, my neuro was pretty convinced that it was peripheral neuropathy caused by some "unknown inflammatory process" - that also got me thinking "perhaps it IS a gluten issue..."

 
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