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Negative Ecg Biopsy


Ihv2gratkids

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Ihv2gratkids Newbie

Hi everyone, I am new to these boards. I have found some very beneficial information here.

I would like to get some opinions on my situation.

I have had chronic diarrhea for the last 13 years following the removal of my gallbladder. I

was told that this is just what happens. Off and on over these last few years I would wake up

with what felt like a rock in my stomach and I could tell that my food was not digesting

properly. Also on occasion I have had severe heartburn but the doctors just said take tums

and lay of the spicy foods.

In Oct of 09 went to the Urgent Care with severe pain in my stomach

and chest. They were just sure that I was having a heart attack and rushed me to the emergency

room(of course it wasn't). I was told it was acid reflux and I needed to take prilosec for the

rest of my life. Symptoms continued even with the medicine and my throat actually began to close

up. I have also began having severe pain under my ribs and all through my back. After several months

on medicine my GI decided to do and endoscopy. He found that I have gastritis and esophogitis but biopsy was negative for Celiac. He says the medicines I'm on should be working. I take 60mg Kapidex twice a day and a

perscription strength pepcid before bed with no changes. The last time I went to GI he threw his hands

up and said he had no clue what was wrong with me. (Makes me feel helpless) With no other ideas he sent

me for a full body CAT scan. They found a few spots on my lungs which sent me to see a Pulmonologist.

He is running a series of blood tests for auto immune diseases but didn't test for Celiac because

my biopsy came back negative. Should I just let this go or try to find a doctor that will pursue my

concerns. This constant pain in my chest and back is so bad that I don't know how much more I can take. I will

try anything. I am so frustrated with doctors right now. My faith in God is what is getting my through all

of this.

I have been eating gluten free for about a week and can tell a very slight decrease in my

symptoms. Should I keep going?

Thanks everyone


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    • Scott Adams
      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
    • catsrlife
      My doctor didn't take the time to listen to anything. I don't even think she knows what it means. She is more concerned about my blood pressure that is caused by her presence than anything else and just wants to push pills at me. The so-called dermatologist wouldn't do a skin test. she prescribed all of these silly antihistamine skin meds. This lady didn't even know what she was talking about and said "they never turn out as celiac, they usually just say it's dermatitis so here's your meds," just like my regular quack. I'm trying to change insurance companies at the moment and that has been a battle because of red tape, wrong turns, and workers having wrong phone numbers. What a joke! The allergy blood days say I have a wheat allergy of .31. Hopefully it's just that and until I find a decent doctor and dermatologist, I'll just lay off the wheat anyway, since it gives me asthma, high blood sugar, and joint pain. So frustrated at this point. The rash on my back of arms/elbows is mostly gone. Both calves and chest have started up. smh. It comes and goes. It fades faster now, though, although my forearms still produce one or two bumps on each side. The itching has calmed down a lot except for the bump area. I have dry skin to begin with so anything affecting it just makes it crazy. i'm never going to eat wheat again. I don't care if they need it to produce results or if it is just an intolerance, allergy, or celiac. It gives me hell.
    • Jmartes71
      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from sciatica or sibo, ibs or hidden gluten. Im in disability limbo and I should have never been a bus driver because im still suffering and trying to heal with zero income except for my husband. This isnt fare that my health is dictating my living and having ti beg for being revalidation of my disregarded celiac disease. Its an emotional roller coaster I don't want to be on and the medical made it worse.New pcp new gi, exhausted, tired and really fed up. GI doctor NOT girl..
    • Mari
      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
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