Confused With My Diagnosis! Need Advice

[Bowilove]

Hello, I am hoping someone here can help me out. I have been through so much and still have no answer regarding whether I have celiac or not. Back in 2008, I gave birth to my first daughter. About a month after, I started getting horrible stomach cramps after pretty much everything I ate it seemed. The only thing out of what my daily diet consisted of that didn't bother me, was rice krispies and milk, so I was living off of that and scared to even eat. I would also have to go to the bathroom, and sometimes after having a BM, I would feel a little relief for about 15 minutes, but then the pain came back and always lasted about 4 hours. Which was hard because by that time, I was hungry again, and would eat and the miserable cycle would start all over again. Back then, I had never heard of celiac disease. I went to the dr once I realized the pain was not going away, but actually getting worse, and they did an endoscopy, the upper gi, stool samples and ultrasound. All came back normal. The dr gave me a prescription of some sort of muscle relaxer to take when i got pain that disolved under my tongue, cant remember the name but I thought it helped. I took that for a couple weeks, and then, I started feeling better as if the problem just dissapeared! So I sorta just thought to myself, "oh well, at least they found nothing wrong, glad it's gone" and forgot about it.

I never had another stomach pain episode or any of those symptoms again. UNTIL last year, once again, a month after having my second child. The same exact thing happened. I was in such horrible pain this time after eating, that I thought I was going to die. I had a spell where the pain was so intense that I had to go throw up. This time I seen a different dr, and they did all of the same tests again. My bloodwork came back highly elevated in whatever it is they test to determine celiacs, so the dr suggested that they do a colonoscopy so they could do biopsies to check for celiac damage. Well my biopsies were completely normal and they said I was 100% healthy as far as my colonoscopy results went. So I asked the dr.."How could my blood be so highly elevated, yet my biopsies be normal? WHY is my blood elevated then?" She said because I have a diet high in carbs normally, that it would be uncommon for me to have celiac without any damage to my intestines. She then said she wanted me to do a 100% gluten free diet for 3 months, then come back and have my blood tested again and see if the levels dropped, which if they did, would tell us that i was most likely celiac. So I was very sure that I ate only gluten free foods, and while I was on this diet, I had no pain at all. What is confusing is, rememember the first time back in 2008 when i had this same problem, I never changed my diet and my pain went away back then as well on it's own. So i don't know whether the diet helped or had nothing to do with my pain going away. So anyway, after my 3 months of gluten free living, I had my bloodwork done again to check if my levels were still high, and guee what, they didn't change at all. They were still highly elevated.

At this point, I was concerned that for one, what IS causing my high levels of that certain thing in my blood, and two, I don't wanna continue in pain and no one be able to help!!!!!! The dr was very unhelpful and basically told me that even though they don't think I have celiac, that if the diet helps and keeps me out of pain, then to continue. And that they could find anything else wrong. I resumed my normal gluten filled diet, and had no pain at all. I was back to my normal self just like I was after the first time this weird experience happened to me. So that leaves me at today, I still eat what I want and I have no pain. The reason I came here to find advice and help, is because I read that some people have silent celiac and could go on eating normally and be unknowingly damaging their insides, and putting themselves at risk of cancers, auto-immunine disorders, and malnutrition! I don't wanna be harming myself. Yet I don't want to be on a gluten free diet for no reason. It's very hard to follow and I would only want to do that if It was necessary for my health. I was pretty ticked off that after all the testing and money it cost us (our insurance isn't too good and we had so many medical bills, right on top of the bills we already had from having a baby)that it got me nowhere. I mean I was glad that none of my tests came back with something horribly wrong with me, thank God, but I still don't know what was wrong, or may STILL be wrong. And thats where I am today. I can't afford more testing. I just feel so lost and wondering what could be wrong with me or if I should just not worry about it.

Hope someone can help. THANKS in advance! =)

[Skylark]

Hi. Sorry you've been through such pain and a frustrating medical experience.

There are multiple tests for celiac, some specific and some that can come up positive from other health conditions like arthritis and colitis. We can't help you without the name of the specific test where you came up positive. I am also confused about the colonoscopy. Celiac is diagnosed with small intestinal biopsies taken from an endoscopy, where they put a tube down your throat. Colonoscopy looks at your rectum and colon, not the small intestines where celiac disease happens.

[eatmeat4good]

You need to get a second opinion. Take your test results to another Dr. Get an Endoscopy and biopsies...not a colonoscopy as Skylark says...she is right. Get a full Celiac Panel. If the blood is elevated at all...it is a positive test. It is feasible and not uncommon for people to have postive bloodwork and no visible intestinal damage. But they have to look at the small intestine not the large intestine. If you had a full Celiac panel...and it was positive...I would accept that as positive regardless if the small intestinal biopsy comes back positive or negative....for exactly the reason as you described. Auto-immune diseases etc. The interesting thing is that your symptoms were post-pregnancy. When your body had to give all that nutrition and vitamins to the baby...probably stealing calcium from your bones and malnourished. The gluten caused a reaction then because your body was depleted. It happened twice. There is no explaining why symtoms come and go...but that too...is consistent with Celiac. It's why it is called the The Great Mimic Disease...or the The Great Imitator Disease...it is very difficult to diagnose...and if you wait until you test positive on blood and biopsy...you may sustain unneccesary damage. If I were you I would pursue another medical opinion...or I would just give up gluten...just in case that is the problem. But it sounds like you want the medical diagnosis before you commit to gluten free and I don't blame you. While you are still eating gluten...try to get the tests again. Knowing it is misdaignosed so often...means you have to be vigilant...even if you test negative now. Good luck with finding a good Dr. That is key.

[Bowilove]

Thanks for your replies guys. I guess i was confused about the colonoscopy..it's been awhile. The colonoscopy was done after finding nothing wrong with the biopsies of my small intestine when they did the endoscopy. They thought maybe there was something going on with me such as colitis or something of that sort, but nothing was wrong. I am sorry I am a little vague, It's hard to remember the details, but the bloodwork was to test my tissue transglutaminase (I looked it up and thats what i remember her saying she was testing). So that is what came back high. But according to this dr, she said that it could be elevated for other reasons, which is why they also do a test by biopsying the intestine. And my intestine wasn't damaged, so after finding out that, she seemed to be at the end of the road with what she could do for me as far as a for sure diagnosis and just told me I could continue the celiac diet if it was helping me, or not if I was not in pain anymore. So I would definately like to be healthy and live a long life and wish I could know 100% whether I have celiac or not.

[mushroom]

There are many blood tests that make up the full celiac panel - they are listed below:

• AGA (antigliadin antibodies)-IgA
• AGA-IgG
• tTG (anti-tissue transglutaminase)-IgA
• EMA (anti-endomysial antibodies)-IgA
• DGP (deamidated gliadin peptide)
• Total serum IgA

The tTG (tissue transglutaminase is only one of the tests. Of them all, the DGP is the newest and the most specific for celiac disease. If you were to have that test and it came back positive, I would consider myself diagnosed and stop eating gluten. Many of us who have either ignored our symptoms or have not found anyone to diagnose them have regretted it later, with other autoimmune diseases appearing which are far more troublesome. Celiac, whether silent or very noisy, is not something which should be ignored. I am sorry you have having such a difficult time getting a definitive diagnosis, but if you were to have the whole panel run and they were all or nearly all positive it might make you (and your doctor) feel better about the diagnosis. The biopsies are not always positive - you need pretty severe GI damage to show up on biopsy (and the doctor has to take enough samples from the right places).

[Bowilove]

There are many blood tests that make up the full celiac panel - they are listed below:

• AGA (antigliadin antibodies)-IgA
• AGA-IgG
• tTG (anti-tissue transglutaminase)-IgA
• EMA (anti-endomysial antibodies)-IgA
• DGP (deamidated gliadin peptide)
• Total serum IgA

The tTG (tissue transglutaminase is only one of the tests. Of them all, the DGP is the newest and the most specific for celiac disease. If you were to have that test and it came back positive, I would consider myself diagnosed and stop eating gluten. Many of us who have either ignored our symptoms or have not found anyone to diagnose them have regretted it later, with other autoimmune diseases appearing which are far more troublesome. Celiac, whether silent or very noisy, is not something which should be ignored. I am sorry you have having such a difficult time getting a definitive diagnosis, but if you were to have the whole panel run and they were all or nearly all positive it might make you (and your doctor) feel better about the diagnosis. The biopsies are not always positive - you need pretty severe GI damage to show up on biopsy (and the doctor has to take enough samples from the right places).

Yeah I am unsure if the test included all of those different things to test for, but I just remember her saying the one thing. And also, I remember her telling me sometimes there are false positives and that maybe that was the case for me. Sounds like from what you guys are saying, maybe my dr didn't do all that she could do for me. I wonder if i could just go in to my regular dr, and ask them to do the full celiac panel on me. Or if I need to see my gastro dr? I'd actually rather see my normal dr. Seems to be more caring. Thanks guys! I definately don't want to let this go.

[mushroom]

There are very seldom false positives on celiac testing (although the tTG can be elevated due to other things). BUT there are very many false negatives. I think your doc has it the wrong way around. Your GP (if he is familiar with what to order) can order the celiac panel for you. Take him in that list of tests and hopefully there is a lab near you which can run the EMA (which is a harder test to process) But even the DGP would be a big step forward.

[Bowilove]

There are very seldom false positives on celiac testing (although the tTG can be elevated due to other things). BUT there are very many false negatives. I think your doc has it the wrong way around. Your GP (if he is familiar with what to order) can order the celiac panel for you. Take him in that list of tests and hopefully there is a lab near you which can run the EMA (which is a harder test to process) But even the DGP would be a big step forward.

Do you happen to know why the EMA is a harder test to process? My GP has a lab right there in the same buliding. It's PAL (Physician's Automated Lab)..not sure if these are just in my town, or elsewhere too. I have a checkup on the 16th for something else, so I plan to bring this list of tests to show my dr, and ask them then and there if they could run these tests for me. Hopefully the answer will be yes and we can get the ball rolling. Does how much intestinal damage have anything to do with your chances of how badly celiac is effecting your system as a whole? Because I am already a worry wart. And I keep thinking "what if" i have this or that already due to possibly having untreated celiac for who know's how long. I was hoping that if I did have celiac, that since I had no visible damage, that maybe it was early stages so to speak, and that I'd be lucky. Any thoughts? Thanks again everyone! =)

[Bowilove]

There are very seldom false positives on celiac testing (although the tTG can be elevated due to other things). BUT there are very many false negatives. I think your doc has it the wrong way around. Your GP (if he is familiar with what to order) can order the celiac panel for you. Take him in that list of tests and hopefully there is a lab near you which can run the EMA (which is a harder test to process) But even the DGP would be a big step forward.

As for the false positives I just found this on webmd, the bold is what stood out to me:

Endomysial antibodies and anti-tissue transglutaminase antibodies are highly reliable in diagnosing celiac disease. An individual with abnormally elevated endomysial and anti-tissue transglutaminase antibodies has a greater than 95% chance of having celiac disease. Anti-gliadin antibodies are less reliable and have a high false positive rate. Thus a person with an abnormally elevated anti-gliadin antibody level does not necessarily have celiac disease. Nevertheless, anti-gliadin antibody levels are useful in monitoring the response to treatment because anti-gliadin antibody levels usually begin to fall within several months of successful treatment of celiac disease with a gluten free diet.

[lilu]

I had an issue with my doc not knowing what tests to order, and so I took the list of tests and contacted the lab directly to see if they offered the tests I wanted and if so, what the CPT-4 codes (insurancese for 'the common number id's of the tests) were. I bet you could contact the lab your doc uses and get the same info. It takes a bit of work, but I think you'll find that with matters of celiac disease or gluten sensitivity, you'll get further if you can give some extra guidance to the MD. Sad but true, IMHO.

[Skylark]

Do you happen to know why the EMA is a harder test to process?

Anti-EMA is a manually run and read immunoflourescence test on monkey esophagus. Most labs are trying to get away from using it at all.

TTG commonly comes up in rheumatoid arthritis, fairly commonly in inflammatory bowel disease, in liver disease, and I think in type 1 diabetes. It's not super-specific for celiac like deamidated gliadin or anti-EMA. Has your doctor ruled out Crohn's and microscopic colitis?

[Bowilove]

Anti-EMA is a manually run and read immunoflourescence test on monkey esophagus. Most labs are trying to get away from using it at all.

TTG commonly comes up in rheumatoid arthritis, fairly commonly in inflammatory bowel disease, in liver disease, and I think in type 1 diabetes. It's not super-specific for celiac like deamidated gliadin or anti-EMA. Has your doctor ruled out Crohn's and microscopic colitis?

Wow, the EMA test *sounds* like it would cost us an arm and a leg! So the ttg is what was elevated in me then right? And you are saying that it commonly comes up high for other diseases such as arthritis ibd and diabetes? Just making sure I understand correctly! You seem to know your stuff, and I am so new and get mixed up easily but i want to get all the facts straight =) So because mine was high are you saying these are reasons it could have been elevated other than celiac? I believe thats what the dr looked for in the colonoscopy...she said I had no signs of crohns, colitis, or anything whatsoever and she took several biopsies during both colonoscopy and endoscopy. I understand inflammatory bowel diseases such as ibs, are not something that a test can prove you have, but after doing all other tests and narrowing down that it's nothing else, then you are left with ibs? Thanks for all of your help!

[Bowilove]

I had an issue with my doc not knowing what tests to order, and so I took the list of tests and contacted the lab directly to see if they offered the tests I wanted and if so, what the CPT-4 codes (insurancese for 'the common number id's of the tests) were. I bet you could contact the lab your doc uses and get the same info. It takes a bit of work, but I think you'll find that with matters of celiac disease or gluten sensitivity, you'll get further if you can give some extra guidance to the MD. Sad but true, IMHO.

Lilu- that's very smart! good idea! I will definately do that

Thank you!

[Skylark]

Wow, the EMA test *sounds* like it would cost us an arm and a leg! So the ttg is what was elevated in me then right? And you are saying that it commonly comes up high for other diseases such as arthritis ibd and diabetes? Just making sure I understand correctly! You seem to know your stuff, and I am so new and get mixed up easily but i want to get all the facts straight =) So because mine was high are you saying these are reasons it could have been elevated other than celiac? I believe thats what the dr looked for in the colonoscopy...she said I had no signs of crohns, colitis, or anything whatsoever and she took several biopsies during both colonoscopy and endoscopy. I understand inflammatory bowel diseases such as ibs, are not something that a test can prove you have, but after doing all other tests and narrowing down that it's nothing else, then you are left with ibs? Thanks for all of your help!

I'm not convinced there is any such thing as IBS. It's a non-diagnosis that usually means your doctor is too stupid to figure out that you probably have a food intolerance...like gluten. The inflammatory bowel diseases that cause TTG are Crohn's and microscopic colitis.

If I were you, with nothing else wrong, and no signs of rheumatoid arthritis that might cause TTG, I would stay away from gluten.

[Bowilove]

I'm not convinced there is any such thing as IBS. It's a non-diagnosis that usually means your doctor is too stupid to figure out that you probably have a food intolerance...like gluten. The inflammatory bowel diseases that cause TTG are Crohn's and microscopic colitis.

If I were you, with nothing else wrong, and no signs of rheumatoid arthritis that might cause TTG, I would stay away from gluten.

Thanks skylark for all of your advice. I feel like ive been helped more here already than i have by my dr. Whats your theory on why my TTG was still elevated once I finished those 3 months of a gluten free diet that the dr ordered I mentioned in my first post? the dr told me if I had celiac, my TTG level would most likely have dropped quite a bit after having eliminated all gluten from my diet for so long. yet it didn't change.

[Skylark]

As my MD friend tells me, doctors have to know and recognize 500 different diseases. A patient only has to become expert on one or two, so we can learn more about celiac than they have time for.

I don't really know about your TTG but I can tell you that it's happened to other members here. I think someone said that anti-gliadin is better for checking that you're not getting gluten. Three months off gluten isn't a terribly long time in the scheme of celiac disease, and it's also possible that you got into some gluten by mistake that kept the TTG up. The diet takes a fair amount of practice.

[Bowilove]

As my MD friend tells me, doctors have to know and recognize 500 different diseases. A patient only has to become expert on one or two, so we can learn more about celiac than they have time for.

I don't really know about your TTG but I can tell you that it's happened to other members here. I think someone said that anti-gliadin is better for checking that you're not getting gluten. Three months off gluten isn't a terribly long time in the scheme of celiac disease, and it's also possible that you got into some gluten by mistake that kept the TTG up. The diet takes a fair amount of practice.

Ahhh, too bad this has so much guess work. I want to bring the list of what to check my blood for to my next dr appt this week, but I am afraid of the cost of more medical bills :/ Especially if I don't get a for sure answer once again. I know that when i did the gluten free diet, I was living off of food that i bought that was the gluten free brands, and other than that i was only eating meat i cooked, veggies and a lot of quesadillas made by me with corn tortillas. I am stuck right now. My husband feels we have done enough testing and thinks I am becoming a hypochondriac So it's really hard being the only one concerned. Yet I don't wanna run around with celiac disease, loading up on the gluten for years and then come to find out years down the road that i did. But i cant make us go broke with medical bills. Time to PRAY harder for some direction. Thanks again guys for all the help.

[lilu]

Can't help but notice that it sounds like you were eating a lot of processed foods. Maybe I misread? Anyway, if you have been, then you should know that even "gluten free" foods may still have some gluten in them. Depending on the agency they were certified by, they can still contain somewhere between 6 and 20 parts per million. While this amount seems negligible, some celiacs still react to even these small amounts. Plus, the more processed food you eat per day, the greater your total consumption of potentially minute amounts of gluten. It can add up.

I'd suggest you eliminate as much of the processed food as possible, and see if that helps. A "whole food" diet of fruits, veggies, proteins, rice, potatoes, quinoa,and healthy fats is delicious and nutritious, AND more likely to be truly gluten free.

[Bowilove]

Hi guys, I have copies of what my dr tested me for and was hoping it would help those that I have been chatting with, see exactly what my blood was tested for and let me know more as to what they think about my diagnosis and possible celiac. Here are the copies, hopefully I post the correct code for the images to show up:

http://img.photobucket.com/albums/1003/prettybow/P1160629.webp

http://img.photobucket.com/albums/1003/prettybow/P1160631.webp

http://img.photobucket.com/albums/1003/prettybow/P1160632.webp

[mushroom]

Hi guys, I have copies of what my dr tested me for and was hoping it would help those that I have been chatting with, see exactly what my blood was tested for and let me know more as to what they think about my diagnosis and possible celiac. Here are the copies, hopefully I post the correct code for the images to show up:

http://img.photobuck...ow/P1160629.webp

http://img.photobuck...ow/P1160631.webp

http://img.photobuck...ow/P1160632.webp

As far as I can see from what you have posted, the only tests that were done specifically for celiac were the tissue transglutaminase IgA and IgG. Your TtG IgA was negative, your TtG IgG was highly positive. Your doctor did not run a total serum IgA to check if you produce normal amounts of IgA (most people normally produce serum IgA (just not the TtG IgA). This will sound confusing to you, but if you are not a normal IgA producer then they have to run the IgG versions of the test because your IgA testing will be invalid. The fact that your IgG test was positive (and significantly so) would suggest that maybe you are not a normal IgA producer, and that your celiac testing was positive.

If I were you I would find a doctor who knows more about celiac disease and would run a full celiac panel on you. Show him/her these results. You do not yet have enough information for an accurate diagnosis.

[Bowilove]

As far as I can see from what you have posted, the only tests that were done specifically for celiac were the tissue transglutaminase IgA and IgG. Your TtG IgA was negative, your TtG IgG was highly positive. Your doctor did not run a total serum IgA to check if you produce normal amounts of IgA (most people normally produce serum IgA (just not the TtG IgA). This will sound confusing to you, but if you are not a normal IgA producer then they have to run the IgG versions of the test because your IgA testing will be invalid. The fact that your IgG test was positive (and significantly so) would suggest that maybe you are not a normal IgA producer, and that your celiac testing was positive.

If I were you I would find a doctor who knows more about celiac disease and would run a full celiac panel on you. Show him/her these results. You do not yet have enough information for an accurate diagnosis.

Thank you so much for your input. I will definately have a new dr do a new celiac panel on me and bring that list someone suggested, of all the actual things I need tested in case once again, I get a dr who isnt through. In the mean time, I do need to be consuming a diet containg gluten in order to get accurate results, correct? I also was curious as to whether I am vitamin deficient in anything..which I guess by these tests, wasnt determined either? I wish I didnt have to rely on myself to be sure I am taken care of fully with all the testing and info I need. I thought thats what drs are for.

[mushroom]

I do need to be consuming a diet containg gluten in order to get accurate results, correct? I also was curious as to whether I am vitamin deficient in anything..which I guess by these tests, wasnt determined either?

Yes, you do need to have been consuming gluten, for at least two months, at the rate of about 3-4 slices of bread per day equivalent. As far as the other testing, I can no longer access your photobucket posts to check what they did test.

[T.H.]

Is there any way to get the blood tests that were done, so you can look at them yourself? A lot of people here have had a lot of practice interpreting the results and might be able to help.

And just to double check: when you went gluten free, how did you go about the diet?

I was wondering if, on your gluten free diet, you avoided gluten as an ingredient, or stuck to foods that didn't have it as an ingredient AND didn't have any cross-contamination in the facility? Did you use separate pans and cutting boards when you cooked at home? Got a new cutting board and collander? Got gluten free lipstick and chapstick and so on?

Not that this necessarily means anything, but if you ARE celiac but you were still getting a lot of gluten cross-contamination in the diet, it might explain why the numbers were still high. I know for myself, my numbers were still high after a few months on the diet, and they didn't go down until I eliminated the cross-contamination completely.

[Bowilove]

Yes, you do need to have been consuming gluten, for at least two months, at the rate of about 3-4 slices of bread per day equivalent. As far as the other testing, I can no longer access your photobucket posts to check what they did test.

Ok I will continue with the gluten foods, and should have a dr appt by next week sometime. I have fixed my photobucket photos, please check them out again if you would for any possible other valuable info, maybe about the vitamin levels etc. THANK YOU!

http://img.photobucket.com/albums/1003/prettybow/P1160637.webp

http://img.photobucket.com/albums/1003/prettybow/P1160636.webp

http://img.photobucket.com/albums/1003/prettybow/P1160635.webp

[Bowilove]

Is there any way to get the blood tests that were done, so you can look at them yourself? A lot of people here have had a lot of practice interpreting the results and might be able to help.

And just to double check: when you went gluten free, how did you go about the diet?

I was wondering if, on your gluten free diet, you avoided gluten as an ingredient, or stuck to foods that didn't have it as an ingredient AND didn't have any cross-contamination in the facility? Did you use separate pans and cutting boards when you cooked at home? Got a new cutting board and collander? Got gluten free lipstick and chapstick and so on?

Not that this necessarily means anything, but if you ARE celiac but you were still getting a lot of gluten cross-contamination in the diet, it might explain why the numbers were still high. I know for myself, my numbers were still high after a few months on the diet, and they didn't go down until I eliminated the cross-contamination completely.

You know, I didn't do anything different with the way I cooked my food. I wasn't told to, and really didn't realize it could be that sensitive. Is it that way for everyone? I can't imagine being able to follow a completely gluten free diet if it's that easy to consume gluten. Never getting to eat out, having to watch the makeup I wear even. That's insane. But good to know. I wonder if a tad of gluten such as what you would come across by using the same cutting board would cause that much problems? (compared to eating a regular gluten filled diet). I did post copies of the blood work that I had done just before I replied to you here. Hoping it will lead to some more answers. I'm so thankful people are willing to help me with my troubles here! I've felt so alone with this and in the dark about a lot of things. Even my own husband wants me to just forget about this since my stomach pain has went away and not returned. I just can't do that without getting a for sure answer of whether I have celiac or not. because I sure don't want to be celiac, and go on eating gluten for years and cause myself to get other horrible diseases. I want to take care of myself and I will do what's necessary. problem Is I need to find out the truth about what's going on with me first!