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What Tests Should I Get Next,i Feel Lost

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I'm wondering what tests I should ask my doctor for next( or beg him) since he thinks I have anxiety only .Right now my current symptoms are , a nervous feeling before a bowel movement(which I've had on/off) my whole life.It seems my stomack/ digestive tract goes into overdrive when I eat gluten.But only after a few days if being off the stuff.For example this Xmas and the week after I ate cake,donuts,cinammon roles, and my symptoms exploded.Sore stiff neck/ back/shoulders and jaw.Sinus flared up again,nervousness ,cold hands and feet,shivering.I stopped eating all gluten and soy (allergic to soy) on Monday.Slowly my muscle tension subsided,and now my stomach can take small meals ( gluten free of course ) and bigger meals like last night (steak and spinach) and it had that weird consequence.I woke up nervous and had to take a #2 which came out fine.Except I know by the way my stonach feels its going to be one of those overdrive days.This is what I called days where I need to be near a toilet because my digestion is in overdrive 4-6 times ill need to go.Not diearhea but small normal ones?!? It's been like this as long as I can remember, either I'm constipated or on overdrive since my early 20's.Only the muscle tension was new this year and sinus problems .Ive had food allergy testing including Gluten (not celiac), blood tests galore for thyroid,diabetes,red/white cells,urine tests.Mri of spine,X-rays spine,lungs,EKG,endoscopy (no biopsy),hpylor I tests .All neg I'm lost.Do celiacs get muscle tension and sinus inflammation? I also have hemmroids in 36 make


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Welcome LiquidCeliac!

Yes, all the symptoms you mention can be caused by Celiac Disease or Non-Celiac Gluten Intolerance. The best next step is to be tested for Celiac Disease. You NEED to be eating gluten for these antibody tests to have their best chance for accuracy. You mention going a few days without gluten - have you spent significant time gluten-free over the past year?

Here is a list of symptoms that can be associated with Celiac Disease:

Many primary doctors will only run a tTG IgA (Tissue Transglutaminase IgA) to screen for Celiac Disease, but you should request a full celiac panel as these tests can not be done after removing gluten.

Full Celiac Blood Panel:

Total Serum IgA

Tissue Transglutaminase IgA and IgG

Gliadin IgA and IgG

Endomysial Antibody IgA

Deamidated Gliadin Peptide IgA and IgG

Also, low vitamins/minerals can indicate you are not absorbing nutrients properly - another indicator of Celiac Disease. So you might want to have these drawn at the same time as the Celiac panel.

Misc blood tests:

CMP (Complete Metabolic Panel), All B Vits, D, K, Iron, Ferritin, Copper and Zinc

Good Luck to you -- Keep Looking for answers :)


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    • I have to tell you that, about 3 years ago, I went to the International Celiac Disease Symposium.  The coffee cross-reactive myth was discussed as we were all consuming vast quantities of Starbucks coffee provided by the Sheraton.  Needless to say, it was good for a laugh.    
    • Yeah, I looked for real scientific studies on gluten cross activity and couldn't find any. I did read something about barely being found in instant coffee--so who knows.
    • Gluten Cross-reactive foods is some sort of odd internet myth.  It started with a company that wanted to sell bogus medical tests.  They have even admitted that the coffee thing isn't true - they used gluten contaminated instant coffee.  However, you have to look at the small print in a lot of nonsense in a large binder of stuff to find that fact.  I did it with one of their company reps.. anyway....   If coffee bothers you, it may just be that it is hard on your system.  Maybe you can get it back after some healing.  And it doesn't sound like you had much protein that week.   edit - just looked at the ingredients- that isn't just coffee - who knows what part of it bothered you?  ingredients on GMO Dark Roast Coffee, Chlorogenic Acid, Garcinia Cambogia 95%,Phaseolamin, Cassiolamine Green Tea 100:1 Extract, Ginseng 100:1 Extract, L-Carnitine with Chromium.
    • Thanks for pointing that out. I just learned about things that are cross reactive with gluten--that have a similar protein structure and the body reacts as if it is a gluten protein: the list of cross reactors includes: Eggs, coffee most other grains corn, potato, rice, yeast, chocolate coffee, corn, butter soy, eggplant, bell pepper and chili pepper and tomatoes. Son of a !!!! This explains a lot. I would be faithfully gluten-free and still have DH flare ups when I certain things. So I just ate sprouted rice with beans, fruit and oolong tea--and I was fine. Then last week I tried this weight loss coffee called SlimRoast which worked UNBELIVABLE (LOST 3 POUNDS IN 2 DAYS) I was eating potato soup with lots of chili paste and soon I noticed I was depressed, I couldn't focus and began to feel that crawling flesh thing I get when I know I have been glutened.  I did more research on how I could love my body and read about glutamine: "Glutamine is also a critical part of our digestive system. It is the primary nutrient for the cells of the intestinal lining where it helps regulate cellular reproduction. Through this mechanism, glutamine helps prevent and rebuild a leaky gut which is common in people with inflammatory and auto-immune conditions. For this reason glutamine supplementation has been shown to be very effective in individuals with ulcerative colitis, CELIAC DISEASE, Crohn's disease, & irritable bowel syndrome." So now have removed everything but the sprouted rice, back on fruit and beans and have added those things that are high in glutamine. Since I eat plant based I can't get glutamine from meat so lots of raw spinach beets parsley cabbage celery kale brussel sprouts and especially red cabbage --in salads and smoothies. So hopefully I am on the mend--miss my weight loss coffee but its not worth getting sick over.     
    • I got the link fine but if I recall correctly I am a member of Medscape - I believe I just plain signed up for it - I know there isn't any fee for anything I sign up for otherwise I think very long and very hard whether it's going to be worth my money or not.
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