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Diagnosed By A Gluten Free Diet Alone?

dizzygrinch

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dizzygrinch Enthusiast
dizzygrinch
Posted

Has anyone been diagnosed, either by a doctor, or themselves, just by doing a gluten free diet? and if so, is there a time frame, where you are suppose to stay gluten free, to help determine if in fact, it was the gluten causing the problems?

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dilettantesteph Collaborator
dilettantesteph
Posted
Has anyone been diagnosed, either by a doctor, or themselves, just by doing a gluten free diet? and if so, is there a time frame, where you are suppose to stay gluten free, to help determine if in fact, it was the gluten causing the problems?

My son was diagnosed this way. The doctor wanted to do a blood test, but regretably, I didn't listen to her and tried diet alone. He seemed better within a couple of days. This is after I had tried the diet myself. My diarrhea that I had for years went away overnight. You should notice an improvement right away, but it depends on what your symptoms are, and how gluten free you go.

After my initial miraculous cure, I found that it wasn't so easy. I became more sensitive and had to cut more things out of my diet. My son seemed to follow the same trend. It takes a lot of determination to stay on the diet under these circumstances when you can't be really sure that you have celiac disease anyways. After close to a year we seem to be getting somewhat less sensitive. Either that or we are just better at keeping gluten free.

In my case it was so obvious because before I went gluten free I used to poop a whole load in my pants twice a week, and I haven't done it since!

It took about a month for my arthritis to clear up. After a couple of months I didn't need my glasses anymore. After a while more I realized how unreasonable I had been to my poor husband. My temper control improved after a couple of weeks. I was amazed by how many symptoms this condition was causing!

Good luck to you, I suggest you have the blood test first and if it is negative and you still want to try the diet, go for it.

Stephanie

fedora Enthusiast
fedora
Posted

My doctor diagnosed me with diet alone. I went off gluten without any real knowledge about the testing. Then when I read about the test I refused to eat gluten again no matter what. I did the enterolab test to help verify it for myself. When I went to see my dr I had been gluten free for 4 months. I brought in a long list of all my symptoms that had improved or gone away. He said 4 months was long enough to not be a placebo effect and that I probably had celiac.

I do recommend getting tests done before going gluten free in case it is hard to tell after going gluten free. I was lucky and responded instantly.

take care

Tim-n-VA Contributor
Tim-n-VA
Posted

Diagnose what? That something bad happens when you consume gluten? That can be done by diet alone. That might be enough.

Celiac on the other hand is a specific body response (auto immune) to gluten that mimics or overlaps with symptoms potentially caused by other things including an allergic reaction to gluten. I don't think you can get a true differential diagnosis from diet alone.

dizzygrinch Enthusiast
dizzygrinch
Posted
  • Author

Hello all. You know what. Im going to just try to stick with a gluten free diet, and see how that goes. It been years since diagnosed with IBS, did another endo and upper GI last year, that did show "flattening of the mucosa" (sp), I was also diagnosed with rhumatoid arthritis, almost non existent vit d levels, but, not one doctor can give me a diagnosis on WHY I have these problems...so, maybe, after all this time, if these symptoms start to go away, maybe its would be more clear that glutin is the culprit. I have had lots of test to try to figure out why I have IBS, arthritis, GERD, and, as alway, never have a answer. So, maybe when I can afford it Ill do the Entero labs, because I believe I can be gluten free, and have that testing done. So, I am going to keep up to date and this forum, and, keep posted on how I feel. Who knows, maybe after some months, my vitamin D levels will go back up as well. Thanks for all the replies too....

leadmeastray88 Contributor
leadmeastray88
Posted
Has anyone been diagnosed, either by a doctor, or themselves, just by doing a gluten free diet? and if so, is there a time frame, where you are suppose to stay gluten free, to help determine if in fact, it was the gluten causing the problems?

I was diagnosed on a combination of things, dietary response being one of them. My GP looked at my extremely positive dietary response and my elevated IgA levels found in Enterolab results. My cousin also has Celiac so that helped, even though I don't have the genes for it.

I truly think though that if you truly feel better gluten-free after months on the diet and ALL of your symptoms subside, then you have your answer. Otherwise, you may need to look elsewhere.

Good luck! :)

Kim

RiceGuy Collaborator
RiceGuy
Posted

I had already given up on doctors and all their ridiculous misdiagnosis, so I didn't (and still don't) have any desire to go through any "official" testing. I had unintentionally been gluten-lite, so whenever I ate gluten, the more immediate symptoms were pronounced enough to notice. The less gluten I ate, the better I felt. So although I didn't relish the idea of not having certain foods, it sure beat feeling awful. I don't have any doubts about my choice.

But, as has been said many times, if you do want a doctor to prove it on paper, remain on gluten until you get the tests done. Not only because the already inaccurate tests will be almost certainly falsely negative, but going back on gluten is likely to be most unpleasant. Symptoms often become far more pronounced, and new symptoms tend to pop up too. From what I've read, the reasons for this are not fully understood.

And no matter what the test results say, try the gluten-free diet to make sure, as it is the best test there is anyway.

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dizzygrinch Enthusiast
dizzygrinch
Posted
  • Author

Hi RiceGuy! You know what...about a couple of months ago, I actually did try to go completely gluten free for about 2 weeks, and I started to feel better. Well, I soon realized that, I had to be consuming gluten for the blood test to be accurate, so, I ate gluten. And, I swear to God, by the time I finished my food, I started to feel a sore forming on my lip, on my gum, and on my bottom lip. I had mouth sores! just that fast! then, I had the worst headache that would not leave for 6 days straight, must have been because I introduced the gluten back into my diet, even though I was only off of it for that short time, after obviously eating it all my life. Well, Im pretty sure that gluten has been effecting me all these years. So, as I said, Im going back to gluten free. In fact, already have. I just have to be very careful and read labels, it is very, very hard. I figure, that heck, Ill probably lose weight too, because Im cutting out breads and stuff. Just not eating that is cheaper than buying the gluten free stuff anyway. Just have to stick with it huh? well, wish me luck! lol, thanks!!

Trust Birth Rookie
Trust Birth
Posted
It took about a month for my arthritis to clear up. After a couple of months I didn't need my glasses anymore. After a while more I realized how unreasonable I had been to my poor husband. My temper control improved after a couple of weeks. I was amazed by how many symptoms this condition was causing!

Can I ask about this? My son was given glasses for depth perception/far sightedness. He has been gluten-free for a few months now. Recently he told me he no longer needed them. I keep brushing it off but I have noticed that his school work and art etc is fine even without it where as it was not before. Could he not need them?!?!?!?! What do you mean you no longer needed them?!

Cinthia

Treen Bean Apprentice
Treen Bean
Posted

I have a question too. I was never tested for Celiac Disease. Instead, my doctor just had me cut gluten from my diet. I have now been gluten free for 2 years. In those two years, I have gained back the 25 pounds I lost, I have regained my energy, stopped having migraines, began having my menstrual cycle again, been able to sleep at night, gained control of my intense mood swings, etc.... I could go on forever. Is it too late to be tested for Celiac by any method? I do not want to start eating gluten again just for a test. I still have violent reactions if I am cross contaminated. Any thoughts?

Thanks!

RiceGuy Collaborator
RiceGuy
Posted

I've also noticed improvement in eyesight. I think it may have been the supplements, but being able to absorb nutrients again would hopefully be just as good if not better.

As for being tested after two years gluten-free, I'd highly doubt it. From what I've read, Enterolab says up to one year. So two years seems like a stretch even for them. But look at it this way: If all the best tests say you aren't intolerant to a given substance, but eating it makes you ill, would you keep eating it?

dilettantesteph Collaborator
dilettantesteph
Posted
Can I ask about this? My son was given glasses for depth perception/far sightedness. He has been gluten-free for a few months now. Recently he told me he no longer needed them. I keep brushing it off but I have noticed that his school work and art etc is fine even without it where as it was not before. Could he not need them?!?!?!?! What do you mean you no longer needed them?!

Cinthia

When I wore my glasses which I did all the time, my vision was becoming unfocused. At first I thought it was a side effect of diabetes, which I didn't know I had, but is related to celiac. My vision was getting worse and worse until one morning before I put on my glasses I realized that I saw better without them. I got them 10 years ago or so when I could no longer read without them. I had bad astigmatism, and couldn't see far away, one eye much worse than the other. Now I can read without them and the two eyes are about the same. I haven't been back to the eye doctor yet so I can't give you a doctor measured difference. Googling turned up celiac causing "vision problems". On this forum I heard from others who stopped needing glasses after going gluten free.

Now I see better without the glasses than I saw with them. I am a musician and I noticed some notes which I had been playing wrong because I thought a natural sign was a sharp or vise versa.

I notice when I get accidentally glutened my vision gets blurry again. I hope that's what you wanted to hear.

dilettantesteph Collaborator
dilettantesteph
Posted
I have a question too. I was never tested for Celiac Disease. Instead, my doctor just had me cut gluten from my diet. I have now been gluten free for 2 years. In those two years, I have gained back the 25 pounds I lost, I have regained my energy, stopped having migraines, began having my menstrual cycle again, been able to sleep at night, gained control of my intense mood swings, etc.... I could go on forever. Is it too late to be tested for Celiac by any method? I do not want to start eating gluten again just for a test. I still have violent reactions if I am cross contaminated. Any thoughts?

Thanks!

I hope they develop a test like that soon. I wouldn't go back on gluten for testing either. I heard some research that could lead to one, but I don't think one exists now.

Trust Birth Rookie
Trust Birth
Posted
When I wore my glasses which I did all the time, my vision was becoming unfocused. At first I thought it was a side effect of diabetes, which I didn't know I had, but is related to celiac. My vision was getting worse and worse until one morning before I put on my glasses I realized that I saw better without them. I got them 10 years ago or so when I could no longer read without them. I had bad astigmatism, and couldn't see far away, one eye much worse than the other. Now I can read without them and the two eyes are about the same. I haven't been back to the eye doctor yet so I can't give you a doctor measured difference. Googling turned up celiac causing "vision problems". On this forum I heard from others who stopped needing glasses after going gluten free.

Now I see better without the glasses than I saw with them. I am a musician and I noticed some notes which I had been playing wrong because I thought a natural sign was a sharp or vise versa.

I notice when I get accidentally glutened my vision gets blurry again. I hope that's what you wanted to hear.

This is very interesting. My son got his glasses the week we took him gluten-free. He never once complained about wearing them or put up a fuss because it opened up a whole new world for him. Even now he doesn't argue about putting them on first thing in the morning. But I have noticed when he does his school work (we home school) or some drawings etc that he's been taking his glasses off. When I ask him why he tells me to wear them makes it worse. I never thought...

Sometimes, I think I'm going insane watching all his and my symptoms disappear. I wonder how an earth gluten can be responsible for all that. I think it runs in my family. My Mom has arthritis, IBS, diabetes and Alopecia (hair loss), My Grandma has MS and a plethora of bowel problems. My symptoms are less severe and mimic more chronic fatigue like symptoms. But they are all gone now since I have eliminated gluten as well as other proteins that resemble gluten.

I want to get our whole family tested through the lab in US. I want a diagnosis. The change in diet definately has shown us it's a serious problem but I want a diagnosis for validity and also so that I can share with others in my family so they can look into it to. kwim?

Cinthia

Amyleigh0007 Enthusiast
Amyleigh0007
Posted
Has anyone been diagnosed, either by a doctor, or themselves, just by doing a gluten free diet? and if so, is there a time frame, where you are suppose to stay gluten free, to help determine if in fact, it was the gluten causing the problems?

My allergist dx me with gluten intolerance based on response to diet plus a few other factors. I don't know about a time frame but when I went completely gluten free I felt better within a few days and much, much better after a few weeks. I am certain gluten was causing my problems since I feel so much better.

dilettantesteph Collaborator
dilettantesteph
Posted
Diagnose what? That something bad happens when you consume gluten? That can be done by diet alone. That might be enough.

Celiac on the other hand is a specific body response (auto immune) to gluten that mimics or overlaps with symptoms potentially caused by other things including an allergic reaction to gluten. I don't think you can get a true differential diagnosis from diet alone.

If you have a variety of symptoms which go away when you start a gluten free diet, and a lot of them could not be caused by allergy, then they come back when you eat gluten, and they go away again when you stop, how could that be anything but celiac disease?

  • 3 weeks later...
grommet Newbie
grommet
Posted
If you have a variety of symptoms which go away when you start a gluten free diet, and a lot of them could not be caused by allergy, then they come back when you eat gluten, and they go away again when you stop, how could that be anything but celiac disease?

It could be gluten intolerance as opposed to celiac disease?

At the moment as you know, the gold std for diagnosis of celiac disease is positive biopsy. but if this comes back negative, you are often not diagnosed with coeliac disease. So, what do you have?

Far be it from me to put words into the OP's mouth but I think he was saying you would not be able to differentiate between celiac disease and Gluten Intolerance just by diet alone.

You know gluten causes you a problem but you don't know whether you have celiac disease.

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