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SUZ42

Don't Know Much About Celiac, Could This Be It?

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Hi,

I don't know much about the s/s of Celiac ds. I have been wondering if I could have it?

Does this sound familiar to any of you?

In Dec 05 I had incredible, indescribable pain that encircled my chest and back. (Same pain in Nov but I ignored it.) It happened 2 eve's in a row. I went to the doctor the next day and was told it was GERD. I said no it's not. EKG and ches x-ray were normal. I was put on a med that didn't help. After being nauseus for a month I was switched to Nexium, no longer nauseus daily.

This could be a very long story, so to make it shorter I'll just list my symptoms, etc.

Symptoms: nausea, feeling of swallowing around lumps in my esophagus, stomach cramping, occassional abdominal cramps, bloating, gas, belching, exhaustion, lightheaded, tingling in hands, around mouth and occassionally feet, midsternal pressure through to mid back pain, constipation, floating stools, lost 30 lbs in 3 months, cold intolerance, occassional headaches.

Tests: EKG, heart Echo, chest X-Rays, MRI thoracic/cervical spine, CT scan of abdomen, Ultrasound of GB, upper GI, Colonoscopy and blood work (not for Celiac). They all came back ok accept bloodwork showed Anemia.

Dx: Jan 06 - GERD. March 06 - (new doctor) Gastritis (to replace GERD), IBS ("constipated" since baby - on and off med whole life for this). May 06 - depression. Oct 04 - B12 deficiency (d/t complaints of exhaustion and pain/diff walking) April 00 - hypothyroidism (d/t complaints of constipation, etc). Dec 06 - anemia (not new, anemic since childhood- but getting worse). Jan 07 serum ferritin deficient.

Meds: syntrhoid, nexium, cymbalta and MOM daily. Iron and benefiber twice daily. B12 inj monthly.

If my dx are correct and the meds are correct, why am I still sick??? The dr's are satisfied with the dx, and primary dr is happy I've gained back about 6 - 8 lbs, it fluctuates. He said I may never feel more than 65% better. I just turned 42, I hope to have many years left. I want to feel good and I want to be satisfied with a dx. Maybe it's too much to ask. Anyway, does this sound like it could be Celiac related?

Thank you all for taking the time to read this.

Suz


Suzanne

2/07

EnteroLab

Antigliadin IgA [pos.]

Antitissue Transglutaminase IgA [pos.]

Anti-Casein IgA antibody [pos.] {how very sad}

HLA-DQ3 (subtype 8)

HLA-DQ3 (subtype 7)

Gluten free 3/18/07

Casein (very light) 3/18/07

constipation/dysmotility since birth

severe headaches 11/83

hypothyroidism 4/00

B-12 defficiency 10/04

"GERD" 1/06 "Gastritis" 3/06

"IBS" (forever) 3/06

depression w/ pain 4/06

iron defficiency anemia (off and on forever) 12/06

celiac disease 3/07

plus.....

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Hi, Suz, welcome the board.

Most of the symptoms you describe are consistent with celiac disease. If you have extensive damage to the villi, your body will not be absorbing nutirents. Anemia and other deficiencies such as B12 and folic acid are common with celiac. The full specturm of gastrointenstinal problems can occur, including nausea, vomiting, diarrhea, gas, cramps, bloating, etc. Damage to the villi would not show up on xrays or MRI.

As a result of the malabsoption, other effects occur, such as tiredness, sensitivity to cold, and brain fog. In my case, I had had severe headaches from time to time for years. I did not know at the time of my diagnosis that this was a common celiac symptom, but realized after being gluten-free for a couple of years that I no longer got them. It has been more than six years since I had to hide a quiet, dark room for hours due to a headache.

Sometimes the health-care professionals need help. I was having typical symptoms of celiac, combined with serious difficulty controlling my blood sugar (I'm type 1 diabetic). The diabetes clinic knew somethign was wrong when I could eat and an hour later my sugar level was lower, but they weren't able to identify the cause.

My wife stumbled onto some information about celiac disease while investigating diabetes. The two autoimmune diseases appear to be linked. She showed me what she had found, and said, "Peter, all your symptoms are described right here!"

So, I took the information to my family doctor, who was skeptical that I had what he thought was a rare childhood disease, but he agreed to arrange for a GI specialist to do the biopsy.

Get yourself tested. Reliable blood tests are available today, so an endoscopy and biopsy are not necessarily needed, although many doctors still prefer that route.


Peter

Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000. I was retested five years later and the biopsy was normal. You can beat this disease!

Type 1 (autoimmune) diabetes diagnosed in March 1986

Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator since 2007

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Your symptoms are highly suspicious and very consistent with EITHER celiac disease (the most extreme reaction within the broad spectrum of gluten sensitivity) OR plain old run of the mill gluten sensitivity. Doctors who study this are beginning to suggest that as many as 80% of Americans might be gluten sensitive to one degree or another. Gluten sensitivity is not something to ignore....it can make you just as sick as celiac disease does. It can damage organs and tissues within your body. If your doctor knows nothing about all this, find one who does and get tested. After you get tested, go on a 100% gluten free diet and see how you feel!

Hi, Suz, welcome the board.

Most of the symptoms you describe are consistent with celiac disease. If you have extensive damage to the villi, your body will not be absorbing nutirents. Anemia and other deficiencies such as B12 and folic acid are common with celiac. The full specturm of gastrointenstinal problems can occur, including nausea, vomiting, diarrhea, gas, cramps, bloating, etc. Damage to the villi would not show up on xrays or MRI.

As a result of the malabsoption, other effects occur, such as tiredness, sensitivity to cold, and brain fog. In my case, I had had severe headaches from time to time for years. I did not know at the time of my diagnosis that this was a common celiac symptom, but realized after being gluten-free for a couple of years that I no longer got them. It has been more than six years since I had to hide a quiet, dark room for hours due to a headache.

Sometimes the health-care professionals need help. I was having typical symptoms of celiac, combined with serious difficulty controlling my blood sugar (I'm type 1 diabetic). The diabetes clinic knew somethign was wrong when I could eat and an hour later my sugar level was lower, but they weren't able to identify the cause.

My wife stumbled onto some information about celiac disease while investigating diabetes. The two autoimmune diseases appear to be linked. She showed me what she had found, and said, "Peter, all your symptoms are described right here!"

So, I took the information to my family doctor, who was skeptical that I had what he thought was a rare childhood disease, but he agreed to arrange for a GI specialist to do the biopsy.

Get yourself tested. Reliable blood tests are available today, so an endoscopy and biopsy are not necessarily needed, although many doctors still prefer that route.


CAROLE

-------------

Enterolab 1/2006

IgA & tTg Positive

DQ2-0201 (celiac) and DQ1-0604 (gluten)

Casein IgA positive

Mom has 2 celiac genes

Both kids have a celiac gene.

Lots of celiac disease in my family, both sides.

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