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Never Officially Diagnosed

robertwilburn35

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robertwilburn35 Newbie
robertwilburn35
Posted

I have negative test results from my labs and from endoscopy but I get all the symptoms when I eat anything with gluten. Certain foods react more quickly than others but all do evoke a GI reaction and many times with palpitations and general swelling and sometimes general edema. I am not sure what to do. I stay away from anything I think even MAY have gluten and do better. Is this celiac? Is there something else I should be looking for?

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dani nero Community Regular
dani nero
Posted

I have negative test results from my labs and from endoscopy but I get all the symptoms when I eat anything with gluten. Certain foods react more quickly than others but all do evoke a GI reaction and many times with palpitations and general swelling and sometimes general edema. I am not sure what to do. I stay away from anything I think even MAY have gluten and do better. Is this celiac? Is there something else I should be looking for?

What are all your symptoms? (in regards to stomach, bowel-movements, skin, thinking, mood, alertness, general well-being), and do you have any other conditions like diabetes, arthritis or thyroid problems?

srall Contributor
srall
Posted

Based on your symptoms, and the fact that they are alleviated when you avoid gluten, I would say you MAY have celiac (even with a negative test) and at the very least you ARE gluten intolerant. Both of which require a gluten free diet. My tests were negative, but my life changed the day I went gluten free.

As far as looking for other things, I guess that if you are having symptoms that don't clear up with a gluten free diet, and you feel like you need to rule some other things out, then you probably should visit a doctor.

squirmingitch Veteran
squirmingitch
Posted

Were you gluten free before your blood work or endoscopy was done? Were you gluten light? Do you have a copy of the test results for either or both the blood & endoscopy? If you don't, then you should get them & post them here. Often docs don't know what the FULL celiac panel is so they don't do the full celiac panel on the blood. There are people here very versed in deciphering these things.

And as the others have stated; tell us more information. More details.

robertwilburn35 Newbie
robertwilburn35
Posted
  • Author

November of 2011 I was diagnosed with sleep apnea and recieved my cpap on Nov 17th of 2011. The very same time I began heart palpitations and Bp issues. I had an EKG which showed SVT alternating into NSR and Bigeminal runs. I saw a cardiologist and was given a Calcium channel blocker. However, I continued to feel worse and worse. I proceded to gain weight over the next month and a half. I gained 24 lbs in less than 2 months. I was tired, bloated, SOB, and gaining weight. I had every test you could imagine. I recieved a stress test, echo, cardiac cath, chest and abdominal ct, EGD, colonoscopy, and every blood sample possible. The only thing that showed up that was unhealthy was a high colesterol. ALL of the other test were negative for anything. On March 6 2012, I quit working as a garbage collection driver, stopped taking all meds and started a very strict Paleo diet. Prior to November I had been working out 6 days a week and jogging a total of 35 - 40 miles a week. I could run a 5k in about 21 minutes. So needless to say that by the time March 6th came I was feeling pretty low. However, I proceeded to loose 10 lbs in March. I continued the Paleo diet through April and lost another 12 lbs and feeling pretty good about my progress. During April I also began working out and jogging. May has come and my workouts are back to 6 days a week, my 5k is about 25 minutes and I am running about 20 miles a week. I am not back to where I was but I feel like I am on the right track. I am just very concerned about what started all of this. I thought maybe the pesticides or chemicals in the garbage, or the drugs they started me on when the rythm problem started. I also think I may have gluten alergy. Every time I eat anything with wheat I get bloated and have diarhea. Some gluten products are worse than others but I am not sure which ones. The other day I had a reaction almost immediatly that included bloating, gas, diarhea, heart palpitations and generally crappy feeling (I didn't read the ingredients before I prepared some soup). So if the blood test (which was a ciliac disease panel ) results where tissue transglutaminase <3, IGA <3, immunoglobulin A = 222. that is negative then is there something else I should look at? I am nervous to eat anything. I stay away from gluten as much as I know but hate this Paleo diet. I just don't know what else to check.

robertwilburn35 Newbie
robertwilburn35
Posted
  • Author

Oh and I am a 42 year old Male. No other conditions are known. Familly history of heart disease. I have high cholesterol but other than that I am healthy.

squirmingitch Veteran
squirmingitch
Posted

You certainly have a problem with gluten.

We need the normal ranges on your celiac panel not just what you tested as. And it looks like some of the tests were not done. The correct FULL celiac panel is:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

And did the doc take any biopsies when he did the endoscopy? If so, how many? And do you have the written report from the lab on that?

It certainly looks like you did not get the full celiac panel on the blood.

I'm going to let others who are better versed in that tell you about those things.

But I think you have found your problem. Gluten. Either gluten intolerant or celiac. Either way the fix is the same -- no gluten.

You don't have to do the Paleo to be gluten free. I understand your fear of getting glutened. We ALL understand that!

Read this:

http://www.celiac.co...ewbie-info-101/

And welcome to the board! Ask any questions, any time. There are no stupid questions here. the only stupid ones are the ones not asked.

Breathe. There are wonderful people on this board & we are here for you.

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robertwilburn35 Newbie
robertwilburn35
Posted
  • Author

Thank you. I didn't know there was more to the panel. The doctor took a biopsy but said the results are "negative" whatever that means. I didn't do Paleo for gluten free but more for eliminating alot out of my diet. I have begun adding things to my diet one at a time to see if I could figure out exactly what it is. I think I just wanna stay away from gluten and not worry about the rest. Well, maybe the cholesterol, but gluten free and checking everything for gluten helps with watching that too. Thank you again

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