Is Diagnosis Possible

[StephanieM]

Hello. I started a gluten free diet one year ago, when I noticed that upon eliminating gluten for short periods, I just "felt" better. I was desperate for a solution to ongoing health problems despite living a very healthy lifestyle. I workout 5 days per week, eat a very healthy diet, etc.. Upon complete elimination of gluten, symptoms I'd lived with for years seemed to disappear after weeks/months. These included weekly migraines, amenhhorea, lethergy, cold intolerance, constipation, severe bloating, depression, anxiety, and more. I've had these symptoms as long as I could remember, and they went away.

When I am exposed to gluten (by accident obviously), I know within the hour. Bloating is first symptom (6 month pregnant hard belly) followed by a 48 hour migraine, 48 hrs of constipation, and immediate lethergy and desire to sleep. It takes my body about 4-5 days until I feel normal again. Every time I have felt these symptoms, I have done my research and traced it back to gluten that wasn't labelled, or that someone else had cooked and I wasn't told (oil used for breaded foods, then reused for foods I was eating, marinades on skin of meat, even though I don't eat skin)...

I have heard that the only way to get a diagnosis is to "challenge" my body for two weeks. I can't even handle challenging with a miniscule amount of accidental gluten.. How can I get a definitive diagnosis of this gluten intolerance? I have had the blood test for Celiac, but since I have been gluten free for a year, is it possible it could be wrong. It was negative for celiac. The only reason I am so concerned with a diagnosis is because of the possibility that my kids too will suffer.

I have two children, and I worry that they will go undiagnosed.. I have heard that gluten tests for kids are not accurate. Does anyone know any information for either myself or my kids? Is it possible to have a gluten intolerance (non-celiac) and have all those symptoms listed above. Clearly it is not an "allergy" per se, because the symptoms are not limited to my digestive system. So is there any research or any way that I can find out for sure? I don't think my doc would order a biopsy if the blood test was negative. I don't know.. Also, would the biopsy even show anything if I've been gluten free for a year...

Help....

[mushroom]

Hello. I started a gluten free diet one year ago, when I noticed that upon eliminating gluten for short periods, I just "felt" better. I was desperate for a solution to ongoing health problems despite living a very healthy lifestyle. I workout 5 days per week, eat a very healthy diet, etc.. Upon complete elimination of gluten, symptoms I'd lived with for years seemed to disappear after weeks/months. These included weekly migraines, amenhhorea, lethergy, cold intolerance, constipation, severe bloating, depression, anxiety, and more. I've had these symptoms as long as I could remember, and they went away.

When I am exposed to gluten (by accident obviously), I know within the hour. Bloating is first symptom (6 month pregnant hard belly) followed by a 48 hour migraine, 48 hrs of constipation, and immediate lethergy and desire to sleep. It takes my body about 4-5 days until I feel normal again. Every time I have felt these symptoms, I have done my research and traced it back to gluten that wasn't labelled, or that someone else had cooked and I wasn't told (oil used for breaded foods, then reused for foods I was eating, marinades on skin of meat, even though I don't eat skin)...

I have heard that the only way to get a diagnosis is to "challenge" my body for two weeks. I can't even handle challenging with a miniscule amount of accidental gluten.. How can I get a definitive diagnosis of this gluten intolerance? I have had the blood test for Celiac, but since I have been gluten free for a year, is it possible it could be wrong. It was negative for celiac. The only reason I am so concerned with a diagnosis is because of the possibility that my kids too will suffer.

I have two children, and I worry that they will go undiagnosed.. I have heard that gluten tests for kids are not accurate. Does anyone know any information for either myself or my kids? Is it possible to have a gluten intolerance (non-celiac) and have all those symptoms listed above. Clearly it is not an "allergy" per se, because the symptoms are not limited to my digestive system. So is there any research or any way that I can find out for sure? I don't think my doc would order a biopsy if the blood test was negative. I don't know.. Also, would the biopsy even show anything if I've been gluten free for a year...

Help....

In order for the celiac blood test to be accurate you have to have been eating gluten for 2-3 months prior to the test. Same goes for the biopsy. This is because significant healing takes place in the absence of gluten and the small mistakes we make along the way are not significant enough to show up on testing (even though they can still do us harm). The only suggestion I could make as far as your children (and you) are concerned is to do the genetic testing through Enterolab. This will show if you (and your children) carry a celiac gene. If you do this would suggest that you may well have celiac, although the cure for celiac and gluten intolerance is the same--no gluten. But it would help to know if your children carry the gene. If they do you have the option of putting them on a gluten free diet like yourself, or having them tested periodically. Even with the gene they may not develop celiac unless there is some trigger which activates it. Or they may not carry the gene.

Just one suggestion for your dilemma, as I am sure the thought of eating a full gluten diet for two months in order to get a valid test is abhorrent.

[StephanieM]

Thank you so much for your suggestion. I have never heard of this Enterolab.. I live in Canada, could that be why? I will google it and try and get more information... I would imagine that genetic testing would be quite expensive.... I appreciate your reply, and will do some research.

Thanks...

[gfb1]

[snip] But it would help to know if your children carry the gene.[snip]

knowing if you have a 'gene' is only helpful if you plan on reproducing.....

and even then, there are only probabilities to be considered. unfortunately, most people (and this includes md's/do's/rd's/etc/etc/etc) are NOT trained to evaluate genetic risks (nor are they trained to predict the probability of occurrence in offspring).

for example; you do not mention if your spouse has been tested. since you and your spouse (or child's other parent) each contribute 1/2 the genes for your offspring; your genetic test is only 1/2 the story.

so;

in the absence of any professional input... i would not recommend gene testing.

[snip] ... you have the option of putting them on a gluten free diet like yourself, or having them tested periodically. [snip]

frankly, i feel the same way about 'testing' in general. in the absence of symptoms; testing is nearly useless. keep a sharp eye out for symptoms... and as many folks have said in these forums; if being gluten-free makes you feel better... then do it.