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


SUZ42

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SUZ42 Explorer

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


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psawyer Proficient

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.

CMCM Rising Star

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.

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    • par18
      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
    • par18
      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
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    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
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