Diagnosed With Fms And Ibs Years Ago, But Symptoms Are Progressing

[tooyoungtofeelold]

Hi! Just looking for any advice or opinions here in regard to my symptoms and celiac. I'm desperately searching for an answer to find a way to feel better. (32 year old Female). I think my stomach problems started when I was born. My mom said I cried non-stop and spit up constantly. Certain foods seemed to bother me more than others, but I seemed to have relief every once in a while. I always thought the foods that bothered me most were spaghetti with marina sauce, garlic, onions, fast food salads and greasy foods, but latley it's almost everything I eat. I was DX with Fibromyalgia and IBS in 2004 after over a year and a half of testing and visits to specialists. Not once did anyone mention or test for celiac, and it felt like I received "blanket" diagnosis because nothing really showed up. Also, I was never sent to a Gastro specialist. My first major symptom that made me seek answers was an itchy rash on my arms. They tested for lupus after I listed all my symptoms (mostly autoimmune type symptoms), but nothing showed up. I was also tested for rheumatoid arthritis..also negative. I have had 3 children. All 3 of my pregnancies, I was severely anemic and did not respond well to iron supplements. Currently, I am not anemic, but it shows up about every other blood test. Also DX with hypoglycemia...lowest blood sugar level recorded was 40. I could probably write a book, but I'll try to stick with my current symptoms

hair loss/dry, brittle hair (thyroid is fine)

very dry skin/scalp

acne-like rash on face

alternating constipation/diarrhea

instant need to use bathroom after eating/cramping/gas/bloating/severe discomfort..often wake up in middle of the night if I eat after 5pm

muscle/bone pain

cracks in corners of mouth

mouth sores

severe exhaustion/fatigue

anxiety attacks

frequent migraines and headaches

trouble falling asleep despite exhaustion

Always COLD!

I'm sure I'm forgetting a few! The thing that confuses me is that I haven't been able to lose and keep weight off for the past 4 years, and the few things I've read about celiac list weight loss as a symptom? The last time I had major weight loss was on ATkins diet over 4 years ago, and I felt great. I'm not extremely obese, but could stand to lose 20 pounds. I also don't have a very strong appetite. Sometimes, I won't eat for days. My new Dr. thinks my body is in survival mode and storing fat. My recent blood test results had low MPV, low Neutrophils and very high EOS%. I haven't received antibody results yet, and just making my appt with GI. Also, liver had low ALT. Not sure what any of this means, or if it is even related. Just looking for any insight from anyone experienced with celiac, as this is my Dr.'s strongest opinion at the moment. Thanks so much!

[mushroom]

Hi, and welcome to the forum. I would say that you have found friends and fellow travelers.

When you say you new doctor has tested you for antibodies, did you mean the celiac antibodies? I certainly hope so because if you are not celiac, I would judge that you are most probably gluten intolerant.

It is a myth that you have to have experienced weight loss to be celiac. Your doctor is spot on when he says your body is in survival mode; it is not getting the proper nutrients it needs and therefore is storing everything it can lay hands upon. There are just as many overwieght celiacs as underweight, but most docs don't seem to know this. Your list of symptoms is a familiar refrain here, including the diagnoses of fibromyalgia and IBS. These are the waste baskets we are tossed in when they can't figure it out Our blood test values often get knocked out of whack because of the effects of gluten. If you have not had the celiac panel of tests:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

I would suggest you ask him to run those immediately. Now there is a chance that the tests could return a negative result, because so many of us are non-celiac gluten intolerant, and don't show up on the testing, or there are also many false negatives (about 20%). In that event and if your GI will not do the endoscopic biopsy of your small intestine, I would suggest a good trial of the gluten free diet to see if it helps you.

If you do experience relief with the diet you will need to have your vitamin and mineral levels checked because you probably have many deficiencies (including the ferritin) and your thyroid rechecked with Free T3, Free T4 and TSH. If the TSH is high normal, and the others are low normal, your thyroid is out of whack even though you show in normal range--(subclinical hypothyroid). I am still cold; I think I need to inccrease my dose.

Good luck with your GI.