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Celiac Diagnosis

elbar

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elbar Apprentice
elbar
Posted

I have had just about every available test for celiac disease and they have all come out negative. However, I believe I have all the symptoms and because I had celiac disease from the age of 8 months old to eight years old, I deeply believe that I still have it. All the doctors that I have seen say they are complexed about it and that I am "Unique".

My question is: Can I possibly have celiac disease without it showing on all tests?

Thanks in advance for your responses.

elbar

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wowzer Community Regular
wowzer
Posted

You didn't say if you've been gluten free all this time. If you have been and they test you, of course it will be negative. Celiac just doesn't go away or disappear.

Nantzie Collaborator
Nantzie
Posted

Well I think your doctors may be paying too much attention to "Golf" and not enough to their "Medical Journals". ;):D

Any doctor who does even five minutes worth of research on celiac, or bothered to contact any of the celiac associations would have known that if you have already been diagnosed with celiac, you have celiac and will always have celiac. I have read that some kids go through a period of remission in adolescence. I don't think they know yet if the damage goes away or just the symptoms (some people are asymptomatic.) Maybe that's what happened when you were younger.

Up until about 10 years ago they didn't realize that celiac was anything other than a rare childhood condition. But now they know that not only do you never grow out of it, but 1 out of 133 people in the US have it; most of whom don't know it and have never heard of it.

Anyway... Welcome to the board. Things are MUCH easier now than they were when you were a child. We have really good specialty products like pasta, breads, pizza crusts, etc.

Make yourself at home.

Nancy

elbar Apprentice
elbar
Posted
  • Author

Thank you for your responses. I haven't been gluten free for 56 years but have had the rash that I believe is Dermatitis Herpetiformis for as long as I can remember. It's because I know once you are a celiac, you are always a celiac. That is the main reason I keep feeling I have the disease in spite of what all the doctors and tests say. This website is marvelous and keeps me well informed. I appreciate everyone's comments.

elbar

CMCM Rising Star
CMCM
Posted

Doctors used to believe that celiac disease was primarily a childhood disease which frequently "went away". It is now understood that a person can have a degree of "tolerance" to gluten which develops as the body attempts to cope with gluten, thus creating this misconception that it "goes away".

Although I had a lot of suspicious symptoms as an infant and child, I think I'm one of those who had tolerance to gluten. However, things were going on...somewhat in my 20's, strongly so in my 30's, worse in my 40's. I thought I had problems with dairy, not wheat (even though my mom was diagnosed with celiac disease!!). I didn't really suspect celiac disease until the age of 56, when I did Enterolab testing. I've never had a biopsy, so I'll never really know if I actually had celiac disease, but at the point where I sought some sort of diagnosis, I was sick and was at the point where I thought there wasn't a single food that agreed with me. When I went gluten (and dairy) free, I felt better within a couple of weeks. After a year+ gluten and mostly dairy free, I find I can now have occasional dairy without problems. But any gluten mistakes cause the familiar upsets. I have no doubt that if I included gluten on a daily basis again, I'd eventually get very sick again.

I really have almost no desire to eat anything with gluten because I know how it will make me feel. Even with one small "cheat", I found I would feel bad for several days. It's not worth it.

I have had just about every available test for celiac disease and they have all come out negative. However, I believe I have all the symptoms and because I had celiac disease from the age of 8 months old to eight years old, I deeply believe that I still have it. All the doctors that I have seen say they are complexed about it and that I am "Unique".

My question is: Can I possibly have celiac disease without it showing on all tests?

Thanks in advance for your responses.

elbar

loraleena Contributor
loraleena
Posted

It is not possible to have celiac from 8 months to 8 yrs. If you were diagnosed at 8 months you still have it. You may have had a remission it your later childhood, but you should be gluten free.

gfp Enthusiast
gfp
Posted
It is not possible to have celiac from 8 months to 8 yrs. If you were diagnosed at 8 months you still have it. You may have had a remission it your later childhood, but you should be gluten free.

What do you base that on the fact that 64 years ago the doctors guessed a diagnosis?

This is prior to any blood tests (and prior to a ability to biopsy of the intestine... if I remember correctly)...

However if she's been eating for the last 56 years and her doctors have run a recent full celiac panel and she has no symtoms but a rash then it seems at least likely she was just mid-diagnosed 64 years ago???

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Ursa Major Collaborator
Ursa Major
Posted
What do you base that on the fact that 64 years ago the doctors guessed a diagnosis?

This is prior to any blood tests (and prior to a ability to biopsy of the intestine... if I remember correctly)...

However if she's been eating for the last 56 years and her doctors have run a recent full celiac panel and she has no symtoms but a rash then it seems at least likely she was just mid-diagnosed 64 years ago???

I guess you mean misdiagnosed. It took me a couple of minutes to figure it out (brainfog has got me, I think). She never said that the rash is her only symptom, but rather that she has always had it.

Elbar, what tests were run? Did you have the full celiac disease panel done, as well as the biopsy? How many biopsies were taken?

If not all the tests were done, and not at least five biopsies taken, you could have had false negative results.

On the other hand, you may have a gluten intolerance, which wouldn't show up on any of the tests. The symptoms and consequences of eating gluten if you are gluten intolerant can be just as devastating, and the treatment is the same, which is a gluten-free diet.

Do you have symptoms other than the rash? Have you tried the diet, and did you feel better without gluten? If you haven't gone gluten-free yet, you might as well do it now, to see what happens.

elbar Apprentice
elbar
Posted
  • Author

Thank you everyone for responding. To answer some questions, I am currently seeing an allergist and he's trying to figure out what's wrong with me. He said that even if I had celiac disease 56 years ago, it's possible to not have it show up now. He's doing loads of tests so if I hadn't had all the necessary tests previously, I have now. I have had several blood panels, two biopsies as well as the home test from York Labs. The only sympton I have besides the rash is diarrhea but I think that may be coming from lactose intolerance. I have great hopes that this allergist will find all the answers. I don't want to go on a gluten-free diet unless I have to, but if I have to, I will be OK with it. I have been gluten-free but was told to not stay on that diet since all these tests have come back negative. I'm having a lot of skin tests tomorrow but they will only show an allergy, not an intolerance so I may have to continue with the testing until I find something out.

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    • klmgarland
      Help I’m cross contaminating myself,

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      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
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