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Help Newbie


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3 replies to this topic

#1 PETES

 
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Posted 14 March 2004 - 08:11 AM

31608.1

Did anyone have the symptom of constant burping, reflux, and upper bloating prior to their celiac diagnosis? I have these symptoms and as wondering if gluten could be my problem. I tested negative for sprue but decided to try the stool testing at enterolab and they came back postive for gluten sensitivity. My doc says my symptoms are not sprue and that enterolab and Dr. Fine are quacks. Any advice or feedback is greatly appreciated.
Thanks,
Pete
pmorris799@aol.com
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#2 Guest_jhmom_*

 
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Posted 14 March 2004 - 11:03 AM

Hi Pete, yes I believe the symptoms you listed are found in Celiac/gluten sensitivity patients.

Unfortunately most doctors do not accept Dr. Fine's way of testing or his results. It is up to you to trust him and his testing and the fact that he has been diagnosed with Celiac too. He knows what each of us have gone through and I believe wants to truly help others. Most doctors only give us about 5 minutes of their time and listen to about half of what we have to say and they are not knowledgeable about Celiac and are offended when their patients know more about it than they do!

The problem is they want to see everything in black and white, if the blood test do not come back off the charts and they do not see villi damage they are quick to dismiss Celiac. What they don't realize is it takes time for the damage to appear in a biopsy or blood work and time is something we do not have, we do not want to continue to suffer on a daily basis!

Hang in there and trust your body and what it tells you! :D
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#3 deweyhughie

 
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Posted 14 March 2004 - 05:00 PM

Pete,

I did have many of those same symptoms prior to my diagnosis. I have been gluten free for nearly a year and other than minor reflux, I no longer have those symptoms.

Having said that, I am not a big fan of the Enterolab tests. It seems to me that nearly everyone who sends a sample in is either diagnosed with Celiac or gluten sensitivity. Me thinks not 90% of the population has one of these conditions! Just my opinion - take it for what it's worth.

What tests did you have done? Just the blood test, or the endoscopic biopsies too? The blood tests are not as reliable as the biopsy, but without either positive blood tests or more "Celiac typical" (if there is such a thing) symptoms, it may be difficult to get your doctor to order the endoscopy. It is possible he could be persuaded to do an endoscopy to check for esphogeal damage from the reflux. You could then request that he proceed to the small intestine right away and take the biopsies.

The other option is to go gluten free for a few months to see if you improve. One caveat about that is, if you do feel better and want the diagnosis, you have to go back to eating gluten. That can be a bear once you've been away from it.

Sorry I can't paint a better picture!
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Best wishes,
Dewey
Marion, IA

#4 the2ofus

 
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Posted 15 March 2004 - 04:50 PM

Hi Dewey,
I have a questions. I was thinking of ordering the stool test from Enterolab and wanted to know why you think it is inaccurate. I had the same thought but just assumed that was because anyone who was negative, would not be spending time on the celiac web site. I have emailed Enterolab two times to ask some questions and have not gotten a response. I am going to try and find a phone number for them.
I am encluding my daughter and my histories. We are still seaching to see if this is what we have.
Anyone who has time to read it the input would be helpful. If you don't that's ok it is kind of long.
Robin

When I was a child I remember always having stomach aches and Diarrhea. It was there as I grew up but not very severe. On occasion I would get diarrhea but not be “sick”. In my right calf I get a pain that feels like it is in the middle of the bone. As a teenager I was on iron pills for a deficiency.

When I was 22 my son was born and the next day my stomach went haywire. After a couple of months I linked it to dairy for the most part. This was a major part of my diet. I started to watch what I ate and use lactaid tablets.

I have diarrhea still even when I don’t have any dairy. It comes and goes. I could be ok for a few days then have it for a couple. I can’t link it to specific foods. I have heart burn a lot, a few times a week. On occasion I feel “foggy”. ( Almost claustrophobic or anxious). I don’t know if it is after certain foods. I get Migraines and tingling in my fingers occasionally. I am tired most of the time and out of breath often even though two doctors told me I no longer need my daily asthma medication. Not all the time but enough to notice my stools are fatty and float. I often have a gassy stomach. Sometimes I get a pain in my chest that goes straight through my body and out my back. I believe it to be gas. The pain is incredible, feels like you would imagine a heart attack to feel, and wakes me out of my sleep. (I usually burp a lot and tums does nothing. I just wait it out). It has happened a couple of times while awake. When I eat certain pasta dishes such as boxed macaroni and cheese and chef boyarde, I get a funny tingling in the back of my throat. I also often get an uncomfortable feeling in the pit of my stomach. I have a problem swallowing occasionally. Like my throat just closed and it takes a couple of tries to get it down. Other times it’s like it’s stuck and I get a very bad pain in top of my chest like a lump of food way to big to swallow is sitting there. I get light headed sometimes to the point of grapping something so I don’t fall Other times its lighter just a tipsy feeling. I am now 39. This is a long time to not even know that all these symptoms even go together.

My Daughter was colicky when she was born, We tried soy formula, iron free formula and drops for it. I think it was a little better but it didn’t completely take care of it. As the years went on we realized she also was lactose intolerant. She actually went for the test. 10 minutes after drinking the solution she was running for the bathroom. She was positive. The test was taken when she was 10 and now she’s 12 . Eliminating dairy didn’t take care of all her problems either. She has heartburn, Diarrhea, stomach pains, headaches occasionally, Dandruff, Leg cramps, gassy stomach, Chunks coming back up(grayish/tanish in color). She occasionally gets pains in her chest. Enough that she went to a Pediatric Cardiologist. He found nothing wrong and called it growing pains. There may be more that I have forgotten at this time.

She went to a Pediatric GI Doctor. He diagnosed her with Lactose intolerance and Irritable Bowel syndrome. He did the blood test for celiac. The IGG came back irregular but the IGA and IGE were negative. There for he said she has a false positive which means she does not have it.
She is taking Prevacid for heart burn and it is helping. He gave her Bentyl for stomach pains and diarrhea. She hasn’t taken it yet so I don’t know if it works.
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