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Intro & Advice Needed (Negative Test Results)

bmama23

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bmama23 Newbie
bmama23
Posted

Hi...I have been lurking here for several months and finally decided to post something!

A quick (as I can get it) backstory: after having my 2nd miscarriage back in December (have one healthy child), I began researching autoimmune disorders linked to miscarriage and found out about Celiac disease. I was in shock as I read the symptoms that I had: diarhea, constipation, bloating, gas, anxiety, nausea, skin rash, miscarriage, and a link to endometriosis (which I have). I saw a gastro doc who seemed to think I had IBS. I had one initial Celiac panel done, which was negative. I went gluten free anyway, not sure if that was a wise decision or not. I got pregnant again less than two months later. I lost that pregnancy as well. I do not know if it was because I got "glutened" a few times or if I just hadn't healed enough before getting pregnant. Any time that I have gotten glutened since going on the diet, I've gotten sick. Example- I had a bite of my son's mac & cheese (I was feeling sorry for myself) and my belly was so bloated I looked 7 months pregnant (but I obviously wasn't) and I had horrible stomach pains- here's the kicker- I didn't even SWALLOW the pasta! I spit it out because I knew it'd be a bad idea. So you get the picture. I have complete relief from symptoms on the diet.

I decided to get the Celiac gene test done (dq2 & dq8) along with some fertility tests we are running (also found out I have high thryoid antibodies which can also cause miscarriage and make me more likely to be Celiac!) and guess what- the gene tests are negative! Now, I don't know if they did the alpha or just the beta portion of gene tests but am trying to find out. I know there's a chance I could just be gluten sensitive but I don't know if it's possible to still have Celiac disease or not. My "doctor" (not any more) gave this advice, "Just go back to eating gluten!" Um, yeah, and feel sicker than a dog every day??

I guess I'm wondering if it's worth it to get the biopsy done and if I need to go back on gluten to do so. The reason I'd like a positive diagnosis is because I truly feel I have celiac disease or at least gluten intolerance and it would make things easeir for our fertility treatments. I feel like nobody believes me and the doctor I saw is just brushing it off. I feel like I have done more research than the doctor I saw. I am just so overwhelmed and I hate that this stupid disease is so hard to confirm. Should I get the entralab tests done? Should I just forget about it all? Help, please? :)

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ravenwoodglass Mentor
ravenwoodglass
Posted

Yes you do need to go back on gluten for at least 3 months before testing if you are going to have the biopsy done. Even then you could have a false negative. Also while the two genes you were tested for are the most common celiac associated genes they are not the only celiac associated genes. You can be celiac and be negative on testing and gene panels. Some might say you are gluten intolerant instead of celiac but the autoimmune effects are the same and the need to be strictly gluten free is just as important for both.

bmama23 Newbie
bmama23
Posted
  • Author

Yes you do need to go back on gluten for at least 3 months before testing if you are going to have the biopsy done. Even then you could have a false negative. Also while the two genes you were tested for are the most common celiac associated genes they are not the only celiac associated genes. You can be celiac and be negative on testing and gene panels. Some might say you are gluten intolerant instead of celiac but the autoimmune effects are the same and the need to be strictly gluten free is just as important for both.

Thank you for your reply. Unfortunately the thought of going back on gluten for three months is very scary and not something I am sure I want to do :( I guess I'm confused as to what the difference is between celiac disease and just being gluten sensitive. If my reactions are so severe I would assume it's celiac disease but maybe not. I know celiac disease is an autoimmune disorder but what makes GI not be?

And I just got off the phone with the nurse and she was extremely rude to me- told me I don't always answer my phone, she's not going to keep bothering the doctor with questions and that if I have any more questions I need to make an appointment with him. I'm so upset right now....

Skylark Collaborator
Skylark
Posted

Without the genes you are most likely gluten intolerant. There isn't a test for that other than response to the diet. You could gluten yourself up and get the biopsy if you're really curious but it may come back negative. Remember that your doctor does not control your diet. It's fine to stay gluten-free and simply not tell him. B)

pain*in*my*gut Apprentice
pain*in*my*gut
Posted

Hi...I have been lurking here for several months and finally decided to post something!

A quick (as I can get it) backstory: after having my 2nd miscarriage back in December (have one healthy child), I began researching autoimmune disorders linked to miscarriage and found out about Celiac disease. I was in shock as I read the symptoms that I had: diarhea, constipation, bloating, gas, anxiety, nausea, skin rash, miscarriage, and a link to endometriosis (which I have). I saw a gastro doc who seemed to think I had IBS. I had one initial Celiac panel done, which was negative. I went gluten free anyway, not sure if that was a wise decision or not. I got pregnant again less than two months later. I lost that pregnancy as well. I do not know if it was because I got "glutened" a few times or if I just hadn't healed enough before getting pregnant. Any time that I have gotten glutened since going on the diet, I've gotten sick. Example- I had a bite of my son's mac & cheese (I was feeling sorry for myself) and my belly was so bloated I looked 7 months pregnant (but I obviously wasn't) and I had horrible stomach pains- here's the kicker- I didn't even SWALLOW the pasta! I spit it out because I knew it'd be a bad idea. So you get the picture. I have complete relief from symptoms on the diet.

I decided to get the Celiac gene test done (dq2 & dq8) along with some fertility tests we are running (also found out I have high thryoid antibodies which can also cause miscarriage and make me more likely to be Celiac!) and guess what- the gene tests are negative! Now, I don't know if they did the alpha or just the beta portion of gene tests but am trying to find out. I know there's a chance I could just be gluten sensitive but I don't know if it's possible to still have Celiac disease or not. My "doctor" (not any more) gave this advice, "Just go back to eating gluten!" Um, yeah, and feel sicker than a dog every day??

I guess I'm wondering if it's worth it to get the biopsy done and if I need to go back on gluten to do so. The reason I'd like a positive diagnosis is because I truly feel I have celiac disease or at least gluten intolerance and it would make things easeir for our fertility treatments. I feel like nobody believes me and the doctor I saw is just brushing it off. I feel like I have done more research than the doctor I saw. I am just so overwhelmed and I hate that this stupid disease is so hard to confirm. Should I get the entralab tests done? Should I just forget about it all? Help, please? :)

First, I want to tell you how sorry I am for your losses. :(:( I also had a miscarriage last year which, looking back, I believe could have been caused by undiagnosed Celiac. :( I also have had endometriosis for almost 20 years (I am 38 now). Since then, I have gone into Premature Ovarian Failure (again, could be from Celiac, as early menopause is a related condition), so there will be no rainbow baby for me. :(

You don't have to have the genes to have Celiac. I believe there are several people on here that have Celiac and don't have DQ2 or DQ8. Plus, like you said, there are subunits of the genes that most labs don't test for.

If I were you, I would assume you have at the very least gluten intolerance, stay on the gluten-free diet (you don't need a prescription or doctors permission to do that), and get the thyroid issues under control. Hopefully that will do the trick and you will get your little miracle! ;)

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