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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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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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