Could It Be Celiac?

[Stressed]

Hello everyone, I'm new here. I've had symptoms that are text-book Celiac Disease for many months now (some symptoms, for many years). So, at the end of January, I went to my primary. We went over my symptoms and he gave me a lab script for a celiac panel, Lipid panel, metabolic panel, CBC, Thyroid testing (TSH and AB testing), Urinalysis (UA), and food allergy panel. Well, the only "red flags" that came back were my Glucose (100); my TSH was 3.11 (the new Endocrinology recommendations are treatment for anything over 3.00), I had high Thyroglobulin AB and Thyroid Peroxidase AB (so, he's sending me to an endocrinologist); minor issues with my UA (protein, casts, bacteria, ketones, etc.). Looking at my lab results for the Celiac Panel - it states:

Tissue Transglutam AB IGA was <3 (negative). The second listing is: IGA, Serum 396 mg/dL (the reference range is 81-463, which I think is a large range). I was referred to a GI physician and when he reviewed my levels he said, "you don't have celiac". Instead of reviewing my list of symptoms, he just said that flat out. He said I have IBS, gave me Librax and told me to come back in 3 months, he didn't want to do any testing now (endoscopy). Well, I've been on the Librax since 2/17 and it isn't doing a darn thing to help.

So, back to the primary. More testing to rule out other things. My ANA panel was negative, I had a C-reactive protein level of 0.5, my rheumatoid factor was 9 (not high in the reference range), my B12 was low (365) and my folate very high (>24).

My doctor did a fibromyalgia test (tested the trigger points). I had 12 of the 17, so it looks like fibromyalgia. I'm on Neurontin now.

Lastly, sent me also for a sleep study (had it this past Sunday). Right after the test, the tech said to me, "have you ever had an EKG done?". I said that I hadn't. She said, "well, I'm not a doctor and I'm not supposed to tell you this, but you should get one done". I was half-asleep, so I didn't question her further on what she saw, etc. So, I have that added stress.

Sorry to be long winded, it's just so much going on that I don't know what to focus on. Could I possibly have celiac? Is that why the IBS meds aren't working? I don't know what to do anymore and I'm so tired of all of this.

[leadmeastray88]

Unfortunately, the symptoms for Celiac is what makes it so hard to diagnose...they could be anything. There aren't really any "textbook" symptoms, as some Celiacs have no GI symptoms at all, but have migraines, vertigo, etc. instead.

What are your symptoms?

Just because your doctor said you don't have Celiac based on your bloodwork doesn't rule it out. My cousin had the bloodwork done, it came out negative, but her symptoms were so bad my aunt demanded an endoscopy, and there it was. If you're that sure that it's Celiac, demand an endoscopy.

We know how hard it is to get our doctos to listen to us! You're not alone.

Good luck You've already found a great resource

[Stressed]

Thank you so much! Here are my symptoms (which, I've been told are in-line with thyroid disease and fibromyalgia):

-Irregular periods (missed, etc.)

-Weight gain (I know for celiac, it's usually weight loss, correct?)

-HORRIBLE gas pains (instesinal, not stomach area)

-Gas (constant basis)

-Diarrhea

-Extreme fatigue

-Muscle pain, soreness, stiffness

-Joint pain (diagnosed as having stage 2 arthritis in my knees in the Fall. I'm only 31!)

-Constant headache (most pronounced top of head area)

-Shortness of breath w/ even a small amount of exertion

-Chest pain

-Constant allergies (even when I'm at work, away from the cats)

-Depressed mood

-Dry, brittle hair

-Memory (short-term) and concentration problems

-Tingling in hands/feet from time-to-time

[leadmeastray88]

Wow, you sure have an array of symptoms!

If I were you, like I said earlier, I would demand an endoscopy from your GI. If he isn't willing to do it, find one who will.

Don't settle for an IBS diagnosis!! Here we like to call that "I Be Stumped". It makes sense! "Your bowels are irritated, so you have Irritable Bowel Syndrome". What next? "Your arm is sore? You have Sore Arm Syndrome".

Basically he is telling you what you already know.

I'm not sure what else to suggest to you. Some people here (including myself) have used Enterolab. They claim to be able to detect active dietary gluten sensitivity in the stool. They can also do gene testing to see if you have any of the markers associated with Celiac and gluten sensitivity. The validity of these tests is sometimes questioned here, because Dr. Fine, who invented the test, has not published his research and therefore is not "accepted" by the medical community. However, many people here who have positive tests go on the gluten free diet and feel much better, so I think there may be something to be said for these tests.

I hope you find the answers you need soon!

[Stressed]

Thank you so much. I was thinking of the Entrolab. I have a follow-up tomorrow with my Primary, so I am going to ask about another GI. Thank you for your help!

[Mother of Jibril]

Were ttg and total IgA the only tests on your celiac panel? Ttg is very specific for celiac disease, but anti-gliaden is also a good test because it indicates gluten intolerance. (BTW - your total IgA is just fine... it's only a problem if it's too low or way, WAY out of range on the high end).

After I was diagnosed with hypothyroidism last year I started reading about a possible connection to gluten intolerance. I decided to give it a try (like you, I was having a lot of abdominal pain)... wow!! I noticed a difference within 48 hours. I've become really, REALLY strict about my diet (I also have severe food allergies), but as long as I don't eat anything with gluten or corn the abdominal pain is totally gone. So is the joint pain (knees, hips, shoulders).

Keep eating gluten if you're going to get the endoscopy (I agree that it's a good idea), but you can give the gluten-free diet a try immediately afterwards.

[Stressed]

Were ttg and total IgA the only tests on your celiac panel? Ttg is very specific for celiac disease, but anti-gliaden is also a good test because it indicates gluten intolerance. (BTW - your total IgA is just fine... it's only a problem if it's too low or way, WAY out of range on the high end).

After I was diagnosed with hypothyroidism last year I started reading about a possible connection to gluten intolerance. I decided to give it a try (like you, I was having a lot of abdominal pain)... wow!! I noticed a difference within 48 hours. I've become really, REALLY strict about my diet (I also have severe food allergies), but as long as I don't eat anything with gluten or corn the abdominal pain is totally gone. So is the joint pain (knees, hips, shoulders).

Keep eating gluten if you're going to get the endoscopy (I agree that it's a good idea), but you can give the gluten-free diet a try immediately afterwards.

Thank you for the information. The only thing that is indicated on the lab report (BTW - it's from Quest Diagnostics) says:

Celiac Disease COmbp Panel

Tissue Transglutam AB IGA <3

(then, the reference ranges)

IGA, Serum 396

Should I see if I can go to another lab and get the anti-gliaden test done? I'm going to my primary tonight for a follow-up. I want to ask for a referral to another GI specialist, but I'm worried my insurance will deny the procedure if my blood work isn't showing anything. I guess the big thing is when I go tonight to the primary, where can I find evidence, on the internet, that supports the fact that people that get an endoscopy and find out they do in fact have Celiac, didn't test positive on blood work?

Thank you!

[Rebecca's mom]

Thank you so much! Here are my symptoms (which, I've been told are in-line with thyroid disease and fibromyalgia):

-Weight gain (I know for celiac, it's usually weight loss, correct?)

Well, I'll tell ya, I was SHOCKED to learn that 40% of people with celiac disease are overweight, and 30% of that number are morbidly obese! Most doctors - even GIs - don't know that statistic (type in "Weight Loss" on the forum search bar and see what comes up - some folks have lost over 100 pounds without even trying!). At first, I thought that I was just gluten sensitive, as my results came back negative (our daughter was diagnosed with celiac disease last April). However, I have since learned that I carry the celiac disease gene, and that probably meant that the skin rash that had stumped the doctors for 3 years was more than likely Dermatitis Herpetiformis (DH), which is ALWAYS associated with celiac disease.

I have been fighting my weight all of my adult life, and in the past 10 months I have lost 38 pounds, simply by eliminating gluten from my diet. No one believes that I can still eat everything else (chocolate, butter, cheese, potatoes, rice, corn, potato chips, Snickers bars, cokes, etc.), not exercise, and still lose weight and gain muscle. I haven't counted a calorie or weighed a portion since I started on a gluten-free diet, and I haven't been this happy in years! Besides, I felt so good just 24 hours after I started gluten-free that there was NO WAY that I was ever going to eat gluten again -

Most of your symptoms sound EXACTLY like what a lot of people with Celiac experience. It can take a long time for the antibodies to show up in bloodwork. You may want to have a genetic test run to see if you carry one of the Celiac Genes, but be aware that more and more research is finding that there may be other genes out there that contribute to celiac disease.

By all means if you want to try a gluten-free diet, just to see if you feel better, feel free to do so. You have nothing to lose - except for feeling bad! If you are like so many people on this forum, you will probably feel so good that you will NEVER touch gluten again!

Let us know how you are doing -

Teresa Koch

Fort Worth, Texas