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Hi, my name is Brittany. For the past year really I've had on/off diarrhea. It's started becoming more common. For instance it was one every other week, then it kinda went to once a week, then after a little, a few times and week and now I've had it for a month straight. I talked to a doctor and she thinks I possibly have celiac disease. She wants me to stop eating gluten and see how it affects it. If it helps then she said I can either just stop eating gluten or get formally tested. To test she said I'd have to eat a certain amount of gluten every day for x amount of time before they did the test. She said it was expensive though, and I'm uninsured. I'm also bipolar which I've read can have connections with Celiac. So far with the gluten free diet (4 days now) I'm still having some diarrhea but it seems to be lightening up a little bit. It started forming shapes again when it used to not have any shapes (Sorry TMI) so I'm thinking that if it does work I likely have celiac. Should I go for the expensive test or just kinda not eat gluten like the doctor said? I'm just wondering if anyone else decided the same thing or not because if stopping eating gluten works I'm fine with that, but should I confirm it either way? Thanks and sorry for the long post.

 

Edit- Sorry some more info. I'm 23 years old. I've been having appetite problems as well and I usually get headaches towards the end of the day. I think the appetite thing has to do with me feeling so bloated. Which, I've actually started getting some appetite back as well. I don't know if I have any neurological symptoms or anything. My bipolar has been getting worse lately on kinda the anxiety and paranoia side of things too but that could just be part of a mania mood swing. I have no family history of any stomach issues, and based on my diet, how long it's lasted and etc the doctor thinks the most likely thing is celiac. Which is why the not eating gluten thing is kinda a test if it's the right direction to go. I have no insurance, I mean I might as well with what it covers. The GI thing and gluten testing would cost me about 2700 out of pocket and I really can't afford that so I'm just wondering if I should figure out a way to confirm it or just go with it if the gluten-free diet works.

Edited by Vriskahs8

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Hi Brittany,

There are a lot of people who are gluten-free without being diagnosed celiac.  For some they chose not to be tested for insurance reasons, others were tested and did not get a positive result.  That can be true because there is a much larger number of people with NCGS (non-celiac gluten intolerance) than there are with celiac disease.  The people with NCGS feel better eating gluten-free even though they don't have a formal diagnosis.

Your doctor is right about eating gluten to be tested.  The usual process is to eat gluten for 12 weeks before having the blood drawn for antibody testing.  That period of time is called a gluten challenge.  For the endoscopy test only 2 weeks eating gluten is needed.

The problem with going gluten-free before testing and then deciding to do a gluten challenge later is that the symptoms are sometimes worse when resuming gluten eating for the challenge.  It is better to stay on gluten until all testing is completed IMHO.

But, that price tag of $2,700 is rather steep too.  I don't think I'd do the testing at that cost.  The value of testing is variable.  Some people may find it easier to stick to the gluten-free diet if they have a doctors support.  Others may not care about that at all.

There is a test in Canada called Biocard for celiac.  But it only tests one antibody type and some people don't react on that type of antibody.  Last I checked the Biocard test is $50, but it may not be available in the USA.

So, my take, is if you want to go gluten-free to feel better without formal testing, go for it.  But be aware that celiac disease is an autoimmune condition.  Your immune system is very sensitive.  So to get the full benefit of eating gluten-free you need to be as completely gluten-free as possible.  The immune system can react for 6 weeks or more and be doing damage to your body all that time once triggered.  And the amount of gluten that can trigger a reaction is very, very small.

Your doctor may want to test you for vitamin and mineral deficiency also.  Celiac can cause malabsorption of nutrients our bodies need to function well.  Sometimes these issues will resolve by themselves over time.  Other times they may need supplements to correct.

Oh, you may also feel better not eating any dairy for a several months after going gluten-free.  Celiac can make digesting dairy difficult.

And welcome to the forum! :)

Edited by GFinDC

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1 hour ago, GFinDC said:

Hi Brittany,

There are a lot of people who are gluten-free without being diagnosed celiac.  For some they chose not to be tested for insurance reasons, others were tested and did not get a positive result.  That can be true because there is a much larger number of people with NCGS (non-celiac gluten intolerance) than there are with celiac disease.  The people with NCGS feel better eating gluten-free even though they don't have a formal diagnosis.

Your doctor is right about eating gluten to be tested.  The usual process is to eat gluten for 12 weeks before having the blood drawn for antibody testing.  That period of time is called a gluten challenge.  For the endoscopy test only 2 weeks eating gluten is needed.

The problem with going gluten-free before testing and then deciding to do a gluten challenge later is that the symptoms are sometimes worse when resuming gluten eating for the challenge.  It is better to stay on gluten until all testing is completed IMHO.

But, that price tag of $2,700 is rather steep too.  I don't think I'd do the testing at that cost.  The value of testing is variable.  Some people may find it easier to stick to the gluten-free diet if they have a doctors support.  Others may not care about that at all.

There is a test in Canada called Biocard for celiac.  But it only tests one antibody type and some people don't react on that type of antibody.  Last I checked the Biocard test is $50, but it may not be available in the USA.

So, my take, is if you want to go gluten-free to feel better without formal testing, go for it.  But be aware that celiac disease is an autoimmune condition.  Your immune system is very sensitive.  So to get the full benefit of eating gluten-free you need to be as completely gluten-free as possible.  The immune system can react for 6 weeks or more and be doing damage to your body all that time once triggered.  And the amount of gluten that can trigger a reaction is very, very small.

Your doctor may want to test you for vitamin and mineral deficiency also.  Celiac can cause malabsorption of nutrients our bodies need to function well.  Sometimes these issues will resolve by themselves over time.  Other times they may need supplements to correct.

Oh, you may also feel better not eating any dairy for a several months after going gluten-free.  Celiac can make digesting dairy difficult.

And welcome to the forum! :)

Thank you for your informative post. I did see there were blood tests for it but my doctor didn't mention them, she went right to if eating gluten-free does work then she would want me to eat gluten and go to a GI for a scope to confirm which is why it's so pricey. Unfortunately my current insurance only offers preventive care covered and everything else (lab works, specialty doctors, etc) isn't covered. 
I likely do have deficiency issues because I've been either anemic or borderline anemic for as long as I can remember, so I'll have to schedule a blood test with her if this gluten-free diet works. If I'm deficient in anything else I'll make sure to take care of it to prevent any further problems.

I've been very careful. Every-time before I eat something I feel like I search the ingredients and then I also search the web to make sure other people with gluten problems confirm that it's okay to eat. I know it might seem a little excessive but better safe than sorry.

That's good to know with the dairy as well. Thank you.

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You might see if a walk-in lab is near your home.  You can get tested without a doctor.  The TTG IgA is the commonly used celiac disease test.  The full panel is best as the TTG is very, very, good at catching most celiacs, but sometimes issues like an IgA deficiency or other things might not yield a positive on the TTG, but for under a $100 it might be worth pursuing and it is a good place to start.  Check with your own GP about the costs without insurance.  His/her lab might be very reasonable.   

My iron-deficiency anemia resolved in four months on a gluten free diet.  If you choose not to test (blood screening for starters) for celiac disease and experiment with the gluten-free diet and your anemia does not resolve (look at iron stores: ferritin test), it could be due dietary mistakes or another illness like Crohn’s, etc.  then get to a GI for a consult.  

Edited by cyclinglady

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Sorry I tried posting as a guest on my phone and I don't think it went through.

There's a place I can order a blood test online and show up at the clinic to have it done and then they email me the results. My only concern though is I start going gluten-free as to the doctors recommendation to see if it was the issues. I used to eat gluten with pretty much every meal. I've only have 1-2 meals for about 6 months now. I'm pretty tired of forcing myself to eat, and if it is gluten I'm hesitant to start eating it again because I've heard that stopping and then starting again can actually make things worse. If you think it'll still pick it up though, I can have a celiac blood test panel done for only 119 today and I'll head over there and get it done. 

Yeah, I applied for some better health insurance because of my income level (full-time student and part time employee) but it can take up to 45 days to get approved. Once I do though, if the blood test comes back negative (if I take it since the gluten-free diet might screw that up ^^;) then I would have to go back to the doctors and get a recommendation to visit the GI and finally, I would get scoped to confirm whatever the problem is.

Edit - I figured it would be best to go ahead and try the blood test so I scheduled it for later today. I'll post the results once I get them.

Edited by Vriskahs8

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Four days of being gluten free should be fine for testing.  Celiac experts say that healing can in theory occur in two weeks, but that is rare.  The learning curve for the diet is pretty steep.  

Edited by cyclinglady

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1 hour ago, cyclinglady said:

Four days of being gluten free should be fine for testing.  Celiac experts say that healing can in theory occur in two weeks, but that is rare.  The learning curve for the diet is pretty steep.  

That's good to know. I had my blood drawn and since no doctor involved, I could get the results as soon as tomorrow but it could also be Monday. That being said, I'll post here once I get my results. Thanks for all of y'alls help. What's weird is I'm hoping it comes back positive because at least then I'll know for sure what's been wrong with me and causing all these issues.

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Brittany, you should perhaps also consider that your symptoms are a sign of microscopic colitis, which can be diagnosed only by a colonoscopy with biopsies examined under a microscope.  MC also responds well to a gluten-free diet, as well as going dairy free and often soy free.  Finances permitting, it would be good to rule it in or out as a cause.

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I might have to do that. I had the test results come back yesterday during work as negative so I had a grill cheese with tomato soup and the stomach issues are back at full force again. I've never had any issues with dairy in the past. Once I get on better insurance I'll be seeing a GI doctor to make sure everything gets looked at to see what's going on.

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Most doctors use the blood test first before recommending the biopsy. Some doctors are okay with diagnosing patients based on the blood test if it is 10x more than the normal and if you have the gene/s. In my opinion, the blood test is far more accurate than the biopsy as there are only a few things that can cause a false positive. TTG IgA and EMA are very accurate and sensitive to celiac disease. Villous atrophy on the other hand is common with celiac disease BUT it isn’t sensitive to it. A lot of other things cause villous atrophy and using this test by itself can give you a misdiagnosis. Medications, SIBO, IBD and lymphoma can all cause villous atrophy. Obviously, some of these things are serious and can cause similar symptoms to celiac disease. I would talk to your doctor about wanting to do the blood tests first for these reasons. You need to eat 10g of gluten (equivalent to 4 pieces of bread) a day for 8 weeks for testing :) 

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  You can not use out celiac disease yet.  Some celiacs are seronegative and some (like me) never test positive to the TTG and EMA.  But since you do not have health insurance, consider going gluten free for now.  You can always do a challenge later and request the full panel which includes the DGP and get an endoscopy.  

Dairy could be causing you problems, but gluten really might be the actual culprit.   It certainly can not cause you any harm to trial the diet.   There could also be something else going on, so consult with a GI if symptoms persist.  I hope you can figure it out.  I wish you well.  

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4 hours ago, Shayla21 said:

Most doctors use the blood test first before recommending the biopsy. Some doctors are okay with diagnosing patients based on the blood test if it is 10x more than the normal and if you have the gene/s. In my opinion, the blood test is far more accurate than the biopsy as there are only a few things that can cause a false positive. TTG IgA and EMA are very accurate and sensitive to celiac disease. Villous atrophy on the other hand is common with celiac disease BUT it isn’t sensitive to it. A lot of other things cause villous atrophy and using this test by itself can give you a misdiagnosis. Medications, SIBO, IBD and lymphoma can all cause villous atrophy. Obviously, some of these things are serious and can cause similar symptoms to celiac disease. I would talk to your doctor about wanting to do the blood tests first for these reasons. You need to eat 10g of gluten (equivalent to 4 pieces of bread) a day for 8 weeks for testing :) 

You were lucky that you tested positive on the TTG and your result was very high.  Not all celiacs test positive to the TTG or EMA.  Also, the blood tests are pretty good, but not perfect.  I had a very elevated DGP IgA and a Marsh Stage IIIB when I was diagnosed.  Then five years later, my DGP IGA was elevated even higher, yet my intestinal biopsies were normal after being on a gluten free diet for five years.  I think this is one example why intestinal biopsies are still the gold standard in diagnosing celiac disease.  

I wish celiac disease could firmly be diagnosed without such an evasive and costly procedure.  

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17 hours ago, cyclinglady said:

  You can not use out celiac disease yet.  Some celiacs are seronegative and some (like me) never test positive to the TTG and EMA.  But since you do not have health insurance, consider going gluten free for now.  You can always do a challenge later and request the full panel which includes the DGP and get an endoscopy.  

Dairy could be causing you problems, but gluten really might be the actual culprit.   It certainly can not cause you any harm to trial the diet.   There could also be something else going on, so consult with a GI if symptoms persist.  I hope you can figure it out.  I wish you well.  

Thank you. Yeah going gluten-free and cutting back on dairy it took about 8 days to have my first normal stool, then the next day after the grilled cheese stomach issues were back. I'll definitely be seeing a GI once I'm able to and maybe cut out the gluten again if it's causing stomach issues.

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My hubby was gluten free 12 years before my diagnosis.  He went gluten-free per the advice of my allergist and his GP.  The diet worked.  He realizes that I get way more support from family, friends and medical but it is not enough for him to do a gluten challenge.  We kind of like paying our bills by being able to work!  😆. The bottom line is feeling good.  

 

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