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To Test Or Not To Test?

ElizabethN

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ElizabethN Apprentice
ElizabethN
Posted

I am one of the many who stumbled upon a gluten free lifestyle on my own, before being tested. And now, my gastroenterologist would like for me to have a biopsy this summer, and eat gluten for a full month beforehand. I can not decide whether to do this or not, and could use some advice!! I have been reading these boards for awhile, and hope someone might be able to help me.

I first began to suffer from gastrointestinal problems in my late teens. I was diagnosed with h. pylori in college and hoped that was the answer to my health woes. Around this time, I began to notice I was also extremely lactose intolerance and cut most dairy from my diet. However, I continued to struggle with nausea, bloating, abdominal pain, headaches, and severe fatigue. After four long years of endoscopies, colonoscopies, natural supplements, dieticians, and every specialist imaginable I had no answers and was beginning to think I was crazy!

Just as I was ready to quit my job because of my ill health I noticed a pattern between eating pasta and my worst stomach pain. On a whim, I cut bread and pasta from my diet and within a week noticed remarkable changes. I researched further and discovered gluten intolerance and celiac disease- something all four of the gastroenterologists I have seen failed to mention as a possible cause for my symptoms. I eliminated all gluten from my diet, and now I just feel incredible. It has been three months, and I literally am a new person.

I dread the thought of returning to such ill health for the sake of this test. My inclination is not to test, but the doctor I am currently seeing is really pushing me to do this. I have such a family history of stomach problems that it is a possibility there could be other family members with celiac or gluten intolerance.

Has anyone else done the gluten challenge? How hard is it on your body? Is it really worth it to know whether I have celiac disease or gluten intolerance?

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wolfie Enthusiast
wolfie
Posted
I am one of the many who stumbled upon a gluten free lifestyle on my own, before being tested. And now, my gastroenterologist would like for me to have a biopsy this summer, and eat gluten for a full month beforehand. I can not decide whether to do this or not, and could use some advice!! I have been reading these boards for awhile, and hope someone might be able to help me.

I first began to suffer from gastrointestinal problems in my late teens. I was diagnosed with h. pylori in college and hoped that was the answer to my health woes. Around this time, I began to notice I was also extremely lactose intolerance and cut most dairy from my diet. However, I continued to struggle with nausea, bloating, abdominal pain, headaches, and severe fatigue. After four long years of endoscopies, colonoscopies, natural supplements, dieticians, and every specialist imaginable I had no answers and was beginning to think I was crazy!

Just as I was ready to quit my job because of my ill health I noticed a pattern between eating pasta and my worst stomach pain. On a whim, I cut bread and pasta from my diet and within a week noticed remarkable changes. I researched further and discovered gluten intolerance and celiac disease- something all four of the gastroenterologists I have seen failed to mention as a possible cause for my symptoms. I eliminated all gluten from my diet, and now I just feel incredible. It has been three months, and I literally am a new person.

I dread the thought of returning to such ill health for the sake of this test. My inclination is not to test, but the doctor I am currently seeing is really pushing me to do this. I have such a family history of stomach problems that it is a possibility there could be other family members with celiac or gluten intolerance.

Has anyone else done the gluten challenge? How hard is it on your body? Is it really worth it to know whether I have celiac disease or gluten intolerance?

Glad you are feeling better!! Nice to not feel so bad, I know.

I don't know that eating gluten for a month for the biopsy would be enough to show damage or not...I think it depends. I started reading Dangerous Grains today and I think they mentioned that it could take up to 5 yrs for damage to reappear after going gluten-free.

I am kinda faced with the same thing....I have positive bloodwork and went gluten-free, now gastro wants to do a biopsy so I have to eat gluten again. I am leaning towards not doing it.

There is the testing through Enterolabs that everyone here talks about. I don't know much about them other than you can do them if you are gluten-free. There is another test that is mentioned in Dangerous Grains (The Rectal Challenge). It doesn't sound like fun, but is less invasive than the endoscopy biopsy and can be done once you are gluten-free. They say it is pretty reliable and you can get results in 1-2 days. Not sure how common this procedure is, but it may be something worth investigating.

Good luck!

VydorScope Proficient
VydorScope
Posted
Iam kinda faced with the same thing....I have positive bloodwork and went gluten-free, now gastro wants to do a biopsy so I have to eat gluten again. I am leaning towards not doing it.

I would suggest against the biposy, ou ahve POSTIVE BLOOD WORK, thats enough, you have celiac disease. IMO.

As for the first poster, let me ask you this... what will you gain? Is it worth it to return to the way you were, eplsy since a biopsy now has a pretty good chance (even wiht a month) of being non-postive reguardless of you have celiac disease or not? Remeber the bisopy can never rule out celiac disease, can only confirm celiac disease. Given your sistuation it is highly unliky that you would learn much of anything from a bisopy at this point.

Just my take on it, but I am NOT A DOCTOR, nor have I stayed in a holiday inn!

ravenwoodglass Mentor
ravenwoodglass
Posted
I am one of the many who stumbled upon a gluten free lifestyle on my own, before being tested. And now, my gastroenterologist would like for me to have a biopsy this summer, and eat gluten for a full month beforehand. I can not decide whether to do this or not, and could use some advice!! I have been reading these boards for awhile, and hope someone might be able to help me.

I first began to suffer from gastrointestinal problems in my late teens. I was diagnosed with h. pylori in college and hoped that was the answer to my health woes. Around this time, I began to notice I was also extremely lactose intolerance and cut most dairy from my diet. However, I continued to struggle with nausea, bloating, abdominal pain, headaches, and severe fatigue. After four long years of endoscopies, colonoscopies, natural supplements, dieticians, and every specialist imaginable I had no answers and was beginning to think I was crazy!

Just as I was ready to quit my job because of my ill health I noticed a pattern between eating pasta and my worst stomach pain. On a whim, I cut bread and pasta from my diet and within a week noticed remarkable changes. I researched further and discovered gluten intolerance and celiac disease- something all four of the gastroenterologists I have seen failed to mention as a possible cause for my symptoms. I eliminated all gluten from my diet, and now I just feel incredible. It has been three months, and I literally am a new person.

I dread the thought of returning to such ill health for the sake of this test. My inclination is not to test, but the doctor I am currently seeing is really pushing me to do this. I have such a family history of stomach problems that it is a possibility there could be other family members with celiac or gluten intolerance.

Has anyone else done the gluten challenge? How hard is it on your body? Is it really worth it to know whether I have celiac disease or gluten intolerance?

NO IMHO, you run the risk of having happen what happened to me, being to ill to even make it to the endo. The gluten challenge made me extrememly ill. I never had bleeding before being gluten-free now I deal with much more pain and the intestinal bleeding when I consume that poison. You know your body can't tolerate gluten. What purpose is all that pain going to serve other than to maybe, and thats a big maybe, give the doctor something to write down and charge the insurance companies for. If you are still having severe problems then I might do it to make sure nothing else is going on but I would never, ever knowingly poison myself again. I think of it like this - If I went to my doctor and told him I had been addicted to heroin and had beat the addiction would I let him perscribe it for a month to see if I was really addicted? Of course not. Also your endo has no bearing on the other members of your family. They can certainly be tested without your going through all that pain.

ElizabethN Apprentice
ElizabethN
Posted
  • Author
NO IMHO, you run the risk of having happen what happened to me, being to ill to even make it to the endo. The gluten challenge made me extrememly ill. I never had bleeding before being gluten-free now I deal with much more pain and the intestinal bleeding when I consume that poison. You know your body can't tolerate gluten. What purpose is all that pain going to serve other than to maybe, and thats a big maybe, give the doctor something to write down and charge the insurance companies for. If you are still having severe problems then I might do it to make sure nothing else is going on but I would never, ever knowingly poison myself again. I think of it like this - If I went to my doctor and told him I had been addicted to heroin and had beat the addiction would I let him perscribe it for a month to see if I was really addicted? Of course not. Also your endo has no bearing on the other members of your family. They can certainly be tested without your going through all that pain.

Well, I can definitely see the advantages of not testing easier than the advantages of going for it. I agree with everyone that is seems silly to go through being miserable again and still have no answers. I am actually quite sick of all of these tests, especially when the results are always normal. It just makes you wonder when the doc is so insistent on it.. Thanks for the advice, everyone.

jenvan Collaborator
jenvan
Posted

It would be worthwhile to read this short article, Challenging the Gluten Challenge...pros and cons: https://www.celiac.com/st_prod.html?p_prodid=1281

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