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Do I Really Have Celiac Disease Or Am I Gluten Intolerant?

Mama Melissa

By Mama Melissa
in Coping with Celiac Disease

Recommended Posts

Mama Melissa Enthusiast
Mama Melissa
Posted

Hey Guys,

Wow i dont even know where to start.For awhile on and off i would have a mild ache in my stomach for about 2 yrs and some constipation,blood work would always be normal until in sept when i asked my doctor to run a gluten sensivity/celiac test i was told it came back positive at 27 0 to 3 being negative.I was then referred to a gastro who did a biopsy who said i had very mild damamge and the biopsy came back with EVIDENCE of celiac.So therefore he told me i am a celiac and to start the gluten-free diet which i did.I decided to go to a celiac specilaist one of the best in nj Dr.Mogan who started the celiac center in livingston,n.j. I had my old bloodwork sent to him with my biopsy results and he ordered new bloodwork a complete cbc,hepatic function,vitamins tests and also celiac gene test.When i called for my results his first words were well we ruled out celiac.Whatt??I thought i am,then he procedes to say my bloodwork has now came up negative which could be from diet??My biopsy said evidence of celiac not DEFINATE and i do have the celiac gene but he explained it dosent mean i have it because of the gene.However he did say he wants me to stay on the gluten free diet and if i cheat once or twice a yr the world will not come to an end.This leaves me extremely confused but greatful i am on the right track.Any input would greatly be appreciated.~ Melissa~

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shopgirl Contributor
shopgirl
Posted

Your second tests came back negative because you were on the diet. Your first tests were positive because you were still consuming gluten.

You have Celiac Disease.

Mama Melissa Enthusiast
Mama Melissa
Posted
  • Author

yes that makes sense but why would he say we were able to rule out celiac disease that means i dont have the disease???makes no sense to me

kwylee Apprentice
kwylee
Posted

yes that makes sense but why would he say we were able to rule out celiac disease that means i dont have the disease???makes no sense to me

I was told that it is possible to carry the gene but never get the disease. But that certainly means staying gluten free because of that disposition. That being said, if I were given all the results that you have, I would certainly think Celiac disease.

shopgirl Contributor
shopgirl
Posted

Did he understand that you were gluten-free and that you had already previously been diagnosed by blood test and biopsy?

I'm not quite sure I understand why you got positive tests, went on the diet, and then had the tests re-done despite knowing that being gluten-free would offer questionable validity.

jerseyangel Proficient
jerseyangel
Posted

i asked my doctor to run a gluten sensivity/celiac test i was told it came back positive at 27 0 to 3 being negative.I was then referred to a gastro who did a biopsy who said i had very mild damamge and the biopsy came back with EVIDENCE of celiac.

It's Celiac, in my opinion. You had a positive blood test and biopsy.

I don't quite understand doctors who do (re) testing after the patient has been on the gluten-free diet and then deem them not Celiac when the results are negative. I had retesting done after 3 years gluten-free (blood and biopsy) which both came back negative, as we expected. It means the damage has healed and you are doing a good job with your diet. It's what you want!

Mama Melissa Enthusiast
Mama Melissa
Posted
  • Author

well i asked him to restest because i felt worse in the begginning of the diet and didnt have the AMAZING results that some people had 2 weeks into the diet i was really being tested for vitamin levels since i never had them done and i guess he figured he test my blood levels while he was at it.Even when i consulted with him in the doctors office and brought my positive blood results to show him he was wary if i even had celiac and i then sent him the biopsy results from there.I guess he was surprised at how quickly the levels dropped in 3 months?? i dont know but he didnt sound convinced i was a full blown celiac either way from the begginning and even after my results but he wants me to take the precautions.I am happy the diet is working tho and have no plans to stop it just was surprised:)

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Mama Melissa Enthusiast
Mama Melissa
Posted
  • Author

and shopgirl yes he knew all of the info:)

jerseyangel Proficient
jerseyangel
Posted

well i asked him to restest because i felt worse in the begginning of the diet and didnt have the AMAZING results that some people had 2 weeks into the diet i was really being tested for vitamin levels since i never had them done and i guess he figured he test my blood levels while he was at it.Even when i consulted with him in the doctors office and brought my positive blood results to show him he was wary if i even had celiac and i then sent him the biopsy results from there.I guess he was surprised at how quickly the levels dropped in 3 months?? i dont know but he didnt sound convinced i was a full blown celiac either way from the begginning and even after my results but he wants me to take the precautions.I am happy the diet is working tho and have no plans to stop it just was surprised:)

I think you are doing the right thing--absolutely. I'm not at all against retesting--it can be very helpful especially if someone is still having problems after going gluten-free.

It doesn't make sense that he would doubt Celiac after your initial testing, but I've read here about that happening quite a few times and I just don't understand it.

Mama Melissa Enthusiast
Mama Melissa
Posted
  • Author

Me either patti, he did say my blood work was high and i showed him pictures of my stomach the other gastro gave me he said it dosent look like you have celiac i need biopsy results so i sent them. I guess since is says theres evidence isnt good enough maybe the biopsy wasnt positive since it didnt state positive. I dont know how it works how did yours go??? what were ure numbers and biopsy results??Yes i wanted to be thorough with bloodwork because you read soo much how this and that is connected to the disease it scares you:( thank you for understanding xoxo

jerseyangel Proficient
jerseyangel
Posted

Me either patti, he did say my blood work was high and i showed him pictures of my stomach the other gastro gave me he said it dosent look like you have celiac i need biopsy results so i sent them. I guess since is says theres evidence isnt good enough maybe the biopsy wasnt positive since it didnt state positive. I dont know how it works how did yours go??? what were ure numbers and biopsy results??Yes i wanted to be thorough with bloodwork because you read soo much how this and that is connected to the disease it scares you:( thank you for understanding xoxo

The complications can be scary, but sticking to the gluten-free diet will return your chances of getting them to that of the general public.

I had been very ill in the years and months before my diagnosis and it all got much worse after a bout with the flu in 2003--I had to quit my job later that year due mostly to the persistent anemia that didn't respond to supplements. It got so that I couldn't stand upright for long before passing out. I had chronic diarrhea, tingling and numbness, fatigue, anxiety, odd sensations of burning under my skin, brain fog, weight loss....I was afraid I was dying, to tell you the truth. The only thing the testing by my family doctor revealed was the anemia.

I was referred to a Cardiologist (stress echo was negative) and a Gastroenterologist who didn't do the Celiac blood work, just scheduled me for an endoscopy and colonoscopy because they were concerned I might be bleeding internally. He took samples during the endo to biopsy, but saw some changes with his camera that day and sent me home with instructions to begin the gluten-free diet.

The retesting was done 3 years later when we moved and I went to a different gastro. She ran the Celiac Panel, did an endoscopy, and a gene test. All was negative--gene test showed DQ2.

mushroom Proficient
mushroom
Posted

Well, if your biopsy report said "no evidence" that would be different, but "evidence" means there is something there. Evidence is what is given in a trial. There must be "evidence" to convict. If there is "no evidence" then the defendant is not guilty. There can be overwhelming evidence, trace evidence, all different scales of evidence. Even in a civil trial the jury is required to find by a preponderance (most) of the evidence that the defendant did it. You had a highly positive blood test, (strong evidence) and some "evidence" on biopsy (some confirming evidence), plus you have a celiac gene (predisposing evidence)and you have had the symptoms of celiac which have been alleviated by the diet (confirmatory evidence). I would say that the preponderance of the evidence says you have it. The only "evidence" to contradict this diagnosis seems to be the blood test which was drawn after you had been gluten free, and therefore has very little probative value. :P With all due deference to the good doctor's supposedly impeccable credentials, I respectfully disagree with him.

Skylark Collaborator
Skylark
Posted

It sounds to me like you have early celiac disease, which reversed itself when you started on the diet. Some Drs seem to want dramatic evidence with tons of antibodies and totally flattened villi to diagnose celiac. It's really irritating.

Mama Melissa Enthusiast
Mama Melissa
Posted
  • Author

well either way im very happy i found out early:) the gluten free diet isn't soo bad atall as a matter in fact i always liked the stuff i can have neways:)I know some people have issues with cc but as i start to go months on in (4 now)i can tolerate foods with no gluten but may have a risk of cc fine like frito-lay brand items and candie bars without gluten,theres endless meats and fish and i am not picky.It gets a little hard when you are out and about but i am certainly learning to live by if it dosent have gluten in the ingridients i will eat it. I will take my precautions but cant constantly worry myself over cc.I am still having a problem with gluten free breads specifically but not gluten free baked items i dont know maybe i have an allergy to yeast but if i could just get over the bread thing i would be happy.I also seemed to react to gluten-free pasta early on but havent gotten enough courage to try it lately:)I def will remain gluten free for life!

cassP Contributor
cassP
Posted

without ever even looking or considering your blood tests or biopsy, if you have a Celiac gene AND symptoms AND response to the diet- then noone could ever 100% RULE OUT Celiac. it would obviously ALWAYs be a possibility.

i would listen to your first tests and your body :)

Skylark Collaborator
Skylark
Posted

I'm glad to hear the diet is working out for you. It's not hard at all once you're used to it. Some of the breads have a lot of xanthan gum that gets some people. I don't know why you would react to pasta. I like Tinkyada and the Trader Joe's rice pasta.

Mama Melissa Enthusiast
Mama Melissa
Posted
  • Author

yes i did it was prob the tomato sauce & pasta but im sure i would be ok now:)

ravenwoodglass Mentor
ravenwoodglass
Posted

It sounds to me like you have early celiac disease, which reversed itself when you started on the diet. Some Drs seem to want dramatic evidence with tons of antibodies and totally flattened villi to diagnose celiac. It's really irritating.

This is what I was thinking. Some doctors will even tell folks with positive blood work and celiac related changes to keep eating gluten and come back in a year to see if the villi are totally destroyed yet. No matter how sick they are from eating it. I would ignore the second doctor and just keep on the diet. If you need to see a GI in the future I would go to the one who told you to avoid gluten.

rockectman Rookie
rockectman
Posted

I dont trust Dr's. Over 90 percent of celiac's are misdiagnosed. Stick with the gluten-free diet.

Mama Melissa Enthusiast
Mama Melissa
Posted
  • Author

i am def staying on the diet either way.Just kind of gave me false hope:(I am greatful the diet is working in my favor tho.I am just soo scared i will die young with this or due to this.My moms sides alot of them died young(late 40's,50's,60's) from cancer, diabetes but then again they were obvously not diagnosed and ate alllotttt of pasta lol

mushroom Proficient
mushroom
Posted

Now that you are not eating gluten, your life expectancy has just soared :D

Mama Melissa Enthusiast
Mama Melissa
Posted
  • Author

i guess.......why how much shorter would it be????I have heard of people not on the diet who live till very old,i guess it just depends...I guess now i have a great chance just gets depressing sometimes but i would NEVER cheat not knowingly ingest gluten now that i know,thats just plain stupididty no food tastes better than life:)

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