Help! Don't Know What To Do Next....

[vthuskies]

Hi! I'm new to these boards. I've been doing a lot of research about gluten intolerance and celiac disease. Here's my history, I'm at a loss as to how to proceed.

I've always had "stomach issues" thought to be related to anxiety. Lots of nausea, lack of appetite, cramping throughout high school (about 15 years ago) and college. This past April I had a sudden onset (over a weekend) of severe cramping, bloating, gas, diarrhea, loss of appetite. After about 2 weeks of this non-stop I went to my gp and he tested me for celiac sprue. The test came back negative. An ultrasound to check for gall bladder disease, etc was also negative. I was referred to a GI for further testing and was found to be lactose intolerant. I've been dairy-free since the end of June and my sypmtoms have continued and actually worsened in the last few weeks. The GI really wasn't helpful and blamed my probs on a "functional bowel problem" or IBS. I was also just found to have a vitamin B12 deficiency and started on weekly shots yesterday.

I'm so uncomfortable every day, it's really miserable. Are there other tests I should recommend that I have done or should I go gluten-free and see how I react? I'm so tired of feeling this way every day.

Amy

[ShayFL]

Honestly you have nothing to lose by trying a gluten free diet. It is safe and healthy. Your symptoms sound suspicious too. If you can afford it, you can test with Enterolab to see if you have Celiac or gluten intolerance genes. You can also test for antibodies to gluten, soy, dairy and egg.

[GFinDC]

Hmm, did he run the full set of tests? Sometimes they only test for one version of the antigens, and that may miss others that are active. Not everyone reacts the same. If you get your test results and post them, someone will probably be able to interpret them for you.

I became lactose intolerant also, and it took 12 more years to get diagnosed with celiac. Have you checked into elimination diets? They are a good way to find out what food intolerances you may have.

[Lori L.]

Hi! I'm new to these boards. I've been doing a lot of research about gluten intolerance and celiac disease. Here's my history, I'm at a loss as to how to proceed.

I've always had "stomach issues" thought to be related to anxiety. Lots of nausea, lack of appetite, cramping throughout high school (about 15 years ago) and college. This past April I had a sudden onset (over a weekend) of severe cramping, bloating, gas, diarrhea, loss of appetite. After about 2 weeks of this non-stop I went to my gp and he tested me for celiac sprue. The test came back negative. An ultrasound to check for gall bladder disease, etc was also negative. I was referred to a GI for further testing and was found to be lactose intolerant. I've been dairy-free since the end of June and my sypmtoms have continued and actually worsened in the last few weeks. The GI really wasn't helpful and blamed my probs on a "functional bowel problem" or IBS. I was also just found to have a vitamin B12 deficiency and started on weekly shots yesterday.

I'm so uncomfortable every day, it's really miserable. Are there other tests I should recommend that I have done or should I go gluten-free and see how I react? I'm so tired of feeling this way every day.

Amy

Hi Amy,

I know exactly how you feel. My tests for celiac disease came back negative and so did my allergy testing. I don't know if my doctor knew all of the tests to run, but the allergy dr. started me on the gluten free/dairy free diet. Within a day and a half I felt better than I've felt in years. I tested myself with wheat and dairy after being on the diet for 3 weeks, and I won't purposely try that again!! I'm going to a GI on Friday that someone on here recommended who is supposed to know something about celiac disease (my dr. doesn't know much). I'm curious to see what he says. But regardless, I'm sold on the gluten-free diet. I definetely know when I've accidently eaten (or breathed) something that has wheat in it!! You should try to find someone in your area that is recommended as being a specialist on celiac disease. Good luck!

Lori

[Lori L.]

Hi! I'm new to these boards. I've been doing a lot of research about gluten intolerance and celiac disease. Here's my history, I'm at a loss as to how to proceed.

I've always had "stomach issues" thought to be related to anxiety. Lots of nausea, lack of appetite, cramping throughout high school (about 15 years ago) and college. This past April I had a sudden onset (over a weekend) of severe cramping, bloating, gas, diarrhea, loss of appetite. After about 2 weeks of this non-stop I went to my gp and he tested me for celiac sprue. The test came back negative. An ultrasound to check for gall bladder disease, etc was also negative. I was referred to a GI for further testing and was found to be lactose intolerant. I've been dairy-free since the end of June and my sypmtoms have continued and actually worsened in the last few weeks. The GI really wasn't helpful and blamed my probs on a "functional bowel problem" or IBS. I was also just found to have a vitamin B12 deficiency and started on weekly shots yesterday.

I'm so uncomfortable every day, it's really miserable. Are there other tests I should recommend that I have done or should I go gluten-free and see how I react? I'm so tired of feeling this way every day.

Amy

Hi Amy,

I know exactly how you feel. My tests for celiac disease came back negative and so did my allergy testing. I don't know if my doctor knew all of the tests to run, but the allergy dr. started me on the gluten free/dairy free diet. Within a day and a half I felt better than I've felt in years. I tested myself with wheat and dairy after being on the diet for 3 weeks, and I won't purposely try that again!! I'm going to a GI on Friday that someone on here recommended who is supposed to know something about celiac disease (my dr. doesn't know much). I'm curious to see what he says. But regardless, I'm sold on the gluten-free diet. I definetely know when I've accidently eaten (or breathed) something that has wheat in it!! You should try to find someone in your area that is recommended as being a specialist on celiac disease. Good luck!

Lori

[Amyleigh0007]

Like Lori, my Celiac and allergy tests were negative. My allergist suggested I stick with the gluten free diet. She seemed to know much more about Celiac and gluten intolerance then my regular doctor. I feel better then I have in years. And, like Lori, I "tested" myself by eating chicken strips about 3 weeks into my gluten free diet and I will never do that again. I was sick in bed for two days. That is proof enough for me! Try the gluten free diet and see how you feel. If you feel better then you are either a misdiagnosed Celiac or have gluten intolerance (that's the advice my allergist had for me).

[vthuskies]

Thank you all so much for your suggestions and sharing your stories. This is all really new to me and is very overwhelming. I don't know what specific test my gp did for celiac, but I will definitely ask him and find out the results.

I also found a support group website in my state and there are recommendations on doctors to see. I'm going to see if my insurance will let me switch GI's to someone who is more knowledgeable about celiac and gluten intolerance. Should I be seeing an allergist too? Does it matter at all, do I really need a diagnosis or should I just go gluten-free and see if it works and stick with that?

I did order the test from Enterolab to see what it turns up. Hopefully that will arrive in the next few days. In the mean time I'm trying to make the transition to gluten-free. It's really difficult that I can't have dairy either. I'm fixated on what I can't eat. I'll also be traveling in 2 weeks for 5 days, which will take a lot of planning.

Thanks so much for all your help! More advice is always welcome!!!!!

Amy

[vthuskies]

So I called my gp's office to find out what test they ran for celiac. The receptionist pulled my file while I was on the phone, but she said that the file just said "celiac test, negative". I have to go back next Tues for a B12 shot so I am going to ask again what tests they ran and request the 4 tests that are usually recommended. I also made an appt with a different GI (not until Oct. 9!) to get a second opinion and hopefully request a small bowel biopsy. Hopefully this will get things moving in the right direction. Also checked and saw that Enterolab sent out my test kit, so it's on it's way!

Amy

[*lee-lee*]

make sure you continue to consume gluten until after the biopsy. if you stop now, your body will start to heal and the biopsy may come back (false) negative.

also if you can get a copy of the blood work and post the results on here, someone can probably interpret it and tell you if they did all the right tests.

i'm guessing by your name that you live in Vermont? do you live near Burlington?

[mftnchn]

Good advice here. Enterolab results will take about 3 weeks probably.

Hope things are better soon. For travel ideas there are TONS of posts here. Start to learn how to search this forum and almost any question you have you'll find some responses already here for you to read.

[vthuskies]

make sure you continue to consume gluten until after the biopsy. if you stop now, your body will start to heal and the biopsy may come back (false) negative.

also if you can get a copy of the blood work and post the results on here, someone can probably interpret it and tell you if they did all the right tests.

i'm guessing by your name that you live in Vermont? do you live near Burlington?

Thanks for the advice. I don't have an appt until 10/9 and that's just a consultation with the new GI. I have no idea how long it will take to get the biopsy. It really sucks that you have to keep eating gluten so the tests show something. I feel like I'm poisoning myself!

I'm going to ask for a copy of the bloodwork on Tuesday, when I go in for my B12 injection. Will definitely post the results.

Yep, I'm in Vermont! I'm about 45 mins northeast of Burlington in the boonies. I'd love to meet more people up here. I don't know anyone with celiac disease or who is gluten-free.

Amy

[vthuskies]

Good advice here. Enterolab results will take about 3 weeks probably.

Hope things are better soon. For travel ideas there are TONS of posts here. Start to learn how to search this forum and almost any question you have you'll find some responses already here for you to read.

Hopefully the Enterolab kit will get here today. I'm so ready to get it done and send it back out. Can't wait for the results!

I guess since I'm requesting a biopsy with my new GI, I don't have to worry about traveling gluten-free, at least not yet. I've definitely been checking around the boards for ideas and how to deal with eating out, since we do that alot (although that may have to change). You guys are definitely very helpful!

Amy

[vthuskies]

I was able to get a copy of the tests my gp ran for celiac. Here are the results:

Tissue TransgluAb: result 0.9, Unitys: U, Reference Range: <20

EndomysialAb IgA: Result:negative, Reference Range: negative, Analyte Specific Reagent

My gp says he doesn't want to run any more tests and that I should just see the GI again. Guess I'm still on hold until Oct. 9th. I did send out my Enterlab stuff yesterday, so I should have those results by the end of Sept. I'm so frustrated.....

Input welcome!

Amy

[mftnchn]

Too bad they didn't run all the tests. You really need them all. If your total IgA is low it means none of the tests are reliable.

So crummy about the long wait. You can read and prepare for going gluten-free as soon as you get your biopsy. Hang in there.

[vthuskies]

Too bad they didn't run all the tests. You really need them all. If your total IgA is low it means none of the tests are reliable.

So crummy about the long wait. You can read and prepare for going gluten-free as soon as you get your biopsy. Hang in there.

So is that what my results mean? My total IgA is low and the results aren't reliable? I swear, medical professionals no nothing about this disease (at least not up here, but it seems to be a wide spread problem). I guess I'll request to the new GI that all of the tests are run.

Yep, my plan is to learn all I can about going gluten-free and will start after my biopsy (which I will insist on). I'm getting to the point of not caring if I have a diagnosis and just getting started on my road to recovery.

[LDJofDenver]

Here's a good resource for explaining what the different tests are, and their reliability, etc.

Open Original Shared Link It's the University of Chicago Celiac Center website - lots of good info there.

You could even print out a page and take it with you to your appointment -- sometimes it helps for the medical people to see you referencing something from a medical source.

I don't know what it is with (some) doctors -- it's almost like they don't like being told what to do. I'd asked half dozen times (or more) to be tested for this over the past several years - when I always seemed to be going back for the same problems over and over again. And each time, I'd tell them I'm bringing it up because my adult son had been diagnosed with Celiac disease. It would just get shrugged off. Frustrating. The only reason I wasn't really angry when I finally got diagnosed with it, was because it was such a relief to finally have an answer!

[ShayFL]

I know for many they just cant afford it. But when doctors refused to test me for things, or gave a hard time, I just ordered the tests myself through Direct Labs or HealthCheckUSA. Now I have a good doctor who listens. A lot easier on the pocketbook.

[nora-n]

You need the antigliadin IgG test then, and the ttg IgG test. And, about 20% or more with villous atrophy have negative blood tests, so negative blood tests do not rule out celiac.

Low or below range IgA means that the ordinary tests are invalid.

nora

[vthuskies]

Thank you all so much for your wisdom and support! I will print out that page from U of Chicago and bring it to my GI appointment. It's so frustrating when doctors act like they know so much about a disorder, but they are either using outdated info or just dismiss your symptoms. Hopefully the next doc is more open to investigating this.

Thanks again!!!!

amy

[*lee-lee*]

Yep, I'm in Vermont! I'm about 45 mins northeast of Burlington in the boonies. I'd love to meet more people up here. I don't know anyone with celiac disease or who is gluten-free.

I just interviewed for a job in Burlington so I may be moving in the next few months. I'll send you a PM.

[bsiyatadshmayah]

I know for many they just cant afford it. But when doctors refused to test me for things, or gave a hard time, I just ordered the tests myself through Direct Labs or HealthCheckUSA. Now I have a good doctor who listens. A lot easier on the pocketbook.

Thanks for the information! Have it bookmarked just in case.