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Is It Celiac...somebody Help Me!

crazycanuck36

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crazycanuck36 Newbie
crazycanuck36
Posted

Hi there...I am new to this so bear with me. I am having a very hard time, getting a diagnosis and it't driving me crazy. As of July last year I complained of stomach pain, diarrhea, some vomiting bad gas pains, etc, so my doctor suggested she test me for Celiac. I tested positive for the ttg(mildly), then one of the other antibodies came back positive also. My GP seemed very certain, that because I had two positive antibodies it was a sure thing. I was put on a waiting list to see a gastroenterologist and was told the wait was going to be a year to see one. In the meantime, my Rheumatologist told me to stop eating gluten and then when I got my appointment with the Gastro, that I should start eating gluten 6 weeks prior to my appointment with him. So I quit, and what a difference it made. I didn't have the stomach aches, the diarrhea and was able to drink coffee again, and my acid reflux was subsiding. Incidentally, all of these symptoms showed up suddenly in June last year.

I then got a call that a new Gastro was starting up office in town here. So I spoke with him, he ran more blood work, then did a biopsy, which of course both came back negative, due to my gluten free diet. He suspected that I had a false positive blood test. So I went back to eating gluten again, for 3 months. My GP ran a celiac panel again, and it was again positive ttg and it was in the high range, also the other antibody was positive. So the gastro, who is now quite annoyed with me and thinks I am crazy sent me for DNA testing and it came back NEGATIVE, much to my chagrin.

What am I supposed to do? I know the diet works, but the doctors say if I don't get a definite diagnosis, they won't accept the diagnosis from me. It's difficult to just say, I don't eat wheat products....because I may have celiac. Is it possible to have negative DNA, but have these antibodies that test positive when you are eating wheat, and negative when you are not. It seems telltale to me, but the doctors, just won't listen. I also test positive for anti-nuclear antibodies, but my Rheumatologist is leery of diagnosing me with Lupus even though I have those symptoms. I just don't know where to turn. I appreciate any advice given please and thank you.

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mushroom Proficient
mushroom
Posted

Hi, and welcome to the board.

This gastro, like most others, doesn't know an awful lot about celiac testing.

Of course you tested negative when he ran the first blood work and did the biopsy, because you had not been eating gluten. After you had been eating gluten, your blood test was again positive. Instead of sending you for DNA testing he should have done another biopsy to see if you had sufficiently redamaged your small intestine to show up on the biopsy.

DNA testing is interesting but not very informative. Most labs only test for DQ2 and DQ8 genes because the doctors "know" that those are the only two genes that predispose you to celiac disease...NOT!!! There are other genes recognized in the rest of the world as celiac genes, and there are also genes recognized as predisposing to gluten intolerance/sensitivity. Now just having any of these genes does not mean that you have celiac disease or gluten sensitivity - it just means that there is a possibility that you will develop it. That is why they are interesting but not diagnostic. But of course, most GI's don't believe in non-celiac gluten intolerance either, so it's DQ2 or DQ8 or nothing for them :P

Now, being a Canuck you are probably looking for the diagnosis to get the tax deductions for your food. The only way you are going to get this is if he rescopes you, and even then there is a chance (even with positive blood work) that your biopsy could be negative!! I know, I'm sorry, but it does happen :( But it is certainly worth making him redo the scope now that you know the score (if you have not gone back to eating gluten free yet). And once the scope is done, by all means eliminate gluten no matter what the results tell you, because you know that eating gluten free works for you no matter what any one tells you.

Good luck with all this, and stay around and ask any other questions, and tell us what happens. :)

Marlie Apprentice
Marlie
Posted

My daughter is negative on the genetic testing but had a positive biopsy and blood tests . She was diagnosed as celiac prior to the genetic testing. I don't know how she is diagnosed now. I guess I'll find out at the followup but she is gluten free and will remain so.

Dixiebell Contributor
Dixiebell
Posted

If she tested positive on the celiac blood test and the biopsy, then she is indeed celiac.

Mushroom has an explanation for this in the above post.

crazycanuck36 Newbie
crazycanuck36
Posted
  • Author

Wow, this is all very helpful. I didn't know we could get deductions for the food, but that doesn't really matter to me. I will do what I have to do, because it helps. I return to see the gastro doc in March, so it will be interesting to see what he says from there. My family doc told me that if my DNA was negative there was NO chance I could have it. Doctors really need to re-train, to keep abreast of new findings. I will let everyone know what happens then. I suspect it will be negative, but it's been a strange journey. I also am Vitamin D deficient and have inflammation in my system. Hopefully the doc will do another biopsy, and doesn't see it as not cost effective. Thanks again.

crazycanuck36 Newbie
crazycanuck36
Posted
  • Author

Wow, this is all very helpful. I didn't know we could get deductions for the food, but that doesn't really matter to me. I will do what I have to do, because it helps. I return to see the gastro doc in March, so it will be interesting to see what he says from there. My family doc told me that if my DNA was negative there was NO chance I could have it. Doctors really need to re-train, to keep abreast of new findings. I will let everyone know what happens then. I suspect it will be negative, but it's been a strange journey. I also am Vitamin D deficient and have inflammation in my system. Hopefully the doc will do another biopsy, and doesn't see it as not cost effective. Thanks again.

After a little digging and researching last night, I came across an article from the University of Maryland. Apparently they have isolated more genes that cause Celiac disease, but our Doctors aren't testing for these, because they are used to the HLA-DQ2 and HLA-DQ8. Due to my mother having a rare genetic disorder, and my sister having 3 rare genetic diseases, I have come to the conclusion, that with the symptoms I have on gluten, positive blood test while on gluten and negative blood tests while off, I carry a gene that probably won't be discovered for years, and that today, I have started myself to self-recovery and am giving myself a self-diagnosis as having Celiac Disease. My doctors won't acknowledge it, but for once I will feel healthy and know in my heart that I am on the right road. I feel very liberated. I hope that soon the researchers realize how important the genetic research is to people's health and get the information out there.

adab8ca Enthusiast
adab8ca
Posted

After a little digging and researching last night, I came across an article from the University of Maryland. Apparently they have isolated more genes that cause Celiac disease, but our Doctors aren't testing for these, because they are used to the HLA-DQ2 and HLA-DQ8. Due to my mother having a rare genetic disorder, and my sister having 3 rare genetic diseases, I have come to the conclusion, that with the symptoms I have on gluten, positive blood test while on gluten and negative blood tests while off, I carry a gene that probably won't be discovered for years, and that today, I have started myself to self-recovery and am giving myself a self-diagnosis as having Celiac Disease. My doctors won't acknowledge it, but for once I will feel healthy and know in my heart that I am on the right road. I feel very liberated. I hope that soon the researchers realize how important the genetic research is to people's health and get the information out there.

Good for you!! My GP said that because I had the antibodies (very high TTG and gliadin AB's) that I definitely have it but I had the biopsy anyway (positive). In my case, I am glad I did because my symptoms are non typical and my healing is very, very slow so I may not have believed it without seeing it.

I am in Canada as well, and the tax deductions are a pain in the butt. I cannot believe how difficult they make it to claim these, as far as I am concerned, legitimate expenses. You can only claim the difference between the gluten-free and non gluten-free counterpart and if non celiacs eat it as well, you cannot claim it (so technically of my husband eats the corn pasta that I cook for dinner so as to not contaminate the whole kitchen, I can only claim the difference between corn and regular pasta and then, only MY portion of it).

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crazycanuck36 Newbie
crazycanuck36
Posted
  • Author

Good for you!! My GP said that because I had the antibodies (very high TTG and gliadin AB's) that I definitely have it but I had the biopsy anyway (positive). In my case, I am glad I did because my symptoms are non typical and my healing is very, very slow so I may not have believed it without seeing it.

I am in Canada as well, and the tax deductions are a pain in the butt. I cannot believe how difficult they make it to claim these, as far as I am concerned, legitimate expenses. You can only claim the difference between the gluten-free and non gluten-free counterpart and if non celiacs eat it as well, you cannot claim it (so technically of my husband eats the corn pasta that I cook for dinner so as to not contaminate the whole kitchen, I can only claim the difference between corn and regular pasta and then, only MY portion of it).

Wow, that sounds like a pain in the butt. It's kind of funny..my kids prefer the corn pasta to the whole wheat, and my 6 year old said to me today, I don't want to eat bread either, so I think I will be changing everyone's diet. My 9 year old gets gas and stomach aches all the time too, like I used to when I was a little girl. It will do everyone good. Leave it to the government to try to make us work for something that is vital to your health.

ravenwoodglass Mentor
ravenwoodglass
Posted

After a little digging and researching last night, I came across an article from the University of Maryland. Apparently they have isolated more genes that cause Celiac disease, but our Doctors aren't testing for these, because they are used to the HLA-DQ2 and HLA-DQ8. Due to my mother having a rare genetic disorder, and my sister having 3 rare genetic diseases, I have come to the conclusion, that with the symptoms I have on gluten, positive blood test while on gluten and negative blood tests while off, I carry a gene that probably won't be discovered for years, and that today, I have started myself to self-recovery and am giving myself a self-diagnosis as having Celiac Disease. My doctors won't acknowledge it, but for once I will feel healthy and know in my heart that I am on the right road. I feel very liberated. I hope that soon the researchers realize how important the genetic research is to people's health and get the information out there.

Welcome to the club in the gene dept. I have an oddball gene myself and am soooo very thankful I didn't get gene testing until years after I was diagnosed and healed. You had postive blood tests, you had relief on the diet and that is what is the most important anyway. Glad to hear you are listening to your body. It also sounds like Canada make sit as difficult as they do here in the US to get the tax deduction. It just isn't worth all the paper work for many of us.

  • 2 weeks later...
crazycanuck36 Newbie
crazycanuck36
Posted
  • Author

Well I don't know whether to be excited or nervous because I have another consult with a different gastro doc, who is going to give me a second opinion. He doesn't like to do that, but I think he is curious as to how someone can test pos. for ttg while on gluten and negative while off gluten, but not carry either DNA gene that links me to Celiac. I tried to explain to the secretary that there are 9 new genes found in Sweden that can be indicators of Celiac disease, and I hope because he has been doing this for years instead of months like my other gastro, maybe he has seen more and is more open minded than my first one, who just thinks I am crazy. Why must the doctors treat us as if we are hypochondriacs when the symptoms are there, since childhood nonetheless, and some of the tests are conclusive? It is frustrating..but I am hoping for the best!!

crazycanuck36 Newbie
crazycanuck36
Posted
  • Author

I saw the new Gastro today and he was very empathetic. Finally someone who would listen. Unfortunately he wants me to do another biopsy to get a conclusive diagnosis...even though we all know a biopsy does not always come out positive either. However I am willing to do this once more and then if there is nothing, he is at least willing to consider a diagnosis of gluten sensitivity. Either way I will be happy to have a diagnosis one way or the other. It will take months to get in, and I will probably blow up and gain weight on the gluten, but hopefully it's all worth it in the end. Thanks for everyone's support. This forum is truly a godsend and it helps to know that there are others like me out there!!

mushroom Proficient
mushroom
Posted

Good luck, you crazycanuck!. You are lucky to find an understanding ear to actually listen to your story. I hope you get some answers.

crazycanuck36 Newbie
crazycanuck36
Posted
  • Author

Good luck, you crazycanuck!. You are lucky to find an understanding ear to actually listen to your story. I hope you get some answers.

Thanks Mushroom...I knew I would wear 'em down and bring him over to my side...

MsCurious Enthusiast
MsCurious
Posted

Well I don't know whether to be excited or nervous because I have another consult with a different gastro doc, who is going to give me a second opinion. He doesn't like to do that, but I think he is curious as to how someone can test pos. for ttg while on gluten and negative while off gluten, but not carry either DNA gene that links me to Celiac. I tried to explain to the secretary that there are 9 new genes found in Sweden that can be indicators of Celiac disease, and I hope because he has been doing this for years instead of months like my other gastro, maybe he has seen more and is more open minded than my first one, who just thinks I am crazy. Why must the doctors treat us as if we are hypochondriacs when the symptoms are there, since childhood nonetheless, and some of the tests are conclusive? It is frustrating..but I am hoping for the best!!

Can you link that Swedish study... or tell me where I can find it? I'm interested in reading about the genetics.

GFinDC Veteran
GFinDC
Posted

Your doctor might be interested in reading this article:

Study Shows Gluten Intolerance Without Celiac Disease

And the Journal article it was based on:

Open Original Shared Link

Scott (the site admin) posted these a few days ago.

crazycanuck36 Newbie
crazycanuck36
Posted
  • Author

Can you link that Swedish study... or tell me where I can find it? I'm interested in reading about the genetics.

Open Original Shared Link

I couldn't find the one i originally read, but this one says the same thing basically. There are new genes and in the other article, I will keep looking, said that they won't test here for a long long time. I also saw somewhere there are links to Crohn's, so maybe they share a gene too. Who knows. It will be years before anyone gets to the bottom of it.

crazycanuck36 Newbie
crazycanuck36
Posted
  • Author

ttp://celiacdisease.about.com/b/2010/03/11/new-gene-study-gives-clues-to-how-celiac-disease-starts.htm

Here is another study that says they have linked 26 other genes not related to HLA!! This is exciting news!! It's about half way down the article.

Pame Newbie
Pame
Posted

After a little digging and researching last night, I came across an article from the University of Maryland. Apparently they have isolated more genes that cause Celiac disease, but our Doctors aren't testing for these, because they are used to the HLA-DQ2 and HLA-DQ8. Due to my mother having a rare genetic disorder, and my sister having 3 rare genetic diseases, I have come to the conclusion, that with the symptoms I have on gluten, positive blood test while on gluten and negative blood tests while off, I carry a gene that probably won't be discovered for years, and that today, I have started myself to self-recovery and am giving myself a self-diagnosis as having Celiac Disease. My doctors won't acknowledge it, but for once I will feel healthy and know in my heart that I am on the right road. I feel very liberated. I hope that soon the researchers realize how important the genetic research is to people's health and get the information out there.

good for you, I am somewhat in the same boat. My Dr. did the blood test but I had already started no eating gluten on my own. My stomach hurts too much to go back to eating it just for a diagnosis. I don't need them to tell me not to eat it do I.

Anyway I feel much better not eating it. It's not an easy task and unfortunately I also have an even worse reaction to MSG and it's many aliases and that is even harder it seems to avoid. I recently read it takes about 2 years to feel better so I am looking forward to the end of this year

crazycanuck36 Newbie
crazycanuck36
Posted
  • Author

good for you, I am somewhat in the same boat. My Dr. did the blood test but I had already started no eating gluten on my own. My stomach hurts too much to go back to eating it just for a diagnosis. I don't need them to tell me not to eat it do I.

Anyway I feel much better not eating it. It's not an easy task and unfortunately I also have an even worse reaction to MSG and it's many aliases and that is even harder it seems to avoid. I recently read it takes about 2 years to feel better so I am looking forward to the end of this year

I too have a reaction to MSG...it makes me ache all over, so I avoid that too!!

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    • Theresa2407
      Is this celiac?

      By Theresa2407 · Posted

      Usually when I digest gluten or wheat I have a 4 hour window before reacting.  If it is immediate it may be an intollerence to another food.  Dairy, Frutose, and bacteria (SIBO) will react with many of the celiac disease symtoms.Has your Doctor ran a  Fructose test which is measuring your Fruit Sugar?  A Hydrogen Beath Test which checks your intestinal bacteria and Dairy?After my biopsy and blood work, these (3) tests were also ran, along with allergy tests, which allery test was sent out of State.  It was a mouth swab. How fast you heal depends on the diet you are following… The following are my personal recommendations to healing. I talk to many newly diagnosed people who start the gluten-free diet with pasta, breads, snacks, and pizza. After a month or so, they do not know why they don’t feel any better and still are sick with their original symptoms: They worry the diet is not working for them. For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. 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    • Wheatwacked
      Is this celiac?

      By Wheatwacked · Posted

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    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      I cut out the rice because it was affecting my stomach at the time ... not necessarily dermatitis herpetiformis. It was Tilda Basmati Rice, sometimes wholegrain rice. I was willing to do whatever it took to heal. Too much fiber also disagrees with me as I have UC.
    • trents
      Is this celiac?

      By trents · Posted

      But you didn't answer my question. When you consume gluten, is there an identifiable reaction within a short period of time, say a few hours?
    • Scott Adams
      Is this celiac?

      By Scott Adams · Posted

      You can still have celiac disease with negative blood test results, although it's not very common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/   
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