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missj

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missj Rookie
missj
Posted

So I got my med records out and looked over them. The only Celiac thing that was tested was the following:

Immunoglobulin A 172

TTG Antibody IgA <3

Gliadin ANtibody IgA <3

I had been told on one of my previous posts that there were more than just that. I know at the time of testing I was on basically a gluten-free diet. If I ate it, it was on accident. I wasn't eating many processed foods and for the most part it had been that way for months. That was all from September. In November I went back and she said she would do some more indepth testing for it but I can't find it in the records. I found CBC w/differential, ANA w/reflex titer and ESR all for the november date. Would any of those be indicative of anything? Do I need to ask for the other tests or is this just considered a negative result? Is it worth trying another round of gluten-free and be really strict or should I just go for the biopsy? I mean, the docs want to scope me anyway so why not? Plus it rules out UC and Crohns. I have been doing gluten-free for the past 48 hours and I'm not as bloated but I also was so misrable Monday night from the bloat I downed a bottle of mag. citrate. So, I'm thinking it could be residual from that? I'm not sure. I definately had more energy today even though I got less sleep last night.

Any ideas? I know the biopsy vs. elimination diet is a personal choice but given the above results what would you do?

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NateJ Contributor
NateJ
Posted

That's a tough decision you will have to make. I ask myself everyday for the last 2 months. Is this the day I drive

to the ER and just sit there until they fix it?

I guess it just depends on how severe your symptoms are. If you think you can wait it out, try the diet and see if it helps at all. The worse thing that could happen is it doesn't work and then you know that its something else.

My problem so far is i'm only on day 6 and my symptoms have not gotten better yet. The only thing that has is i don't have urgency or 'D'. Other than that everything else is the same. It takes will power and dedication to stick to this. I'm learning that each day.

You will find an answer though, you just have to keep the faith that your body will tell you what it needs or doesn't need.

ravenwoodglass Mentor
ravenwoodglass
Posted

If you are gluten free already you will have negative tests. You need to be on a diet that includes gluten in 'regular' levels, like at least 4 to 6 slices of bread a day for about 3 months before the tests have any chance of showing a positive. If you need a diagnosis then do the 3 month challenge and get retested. If the challenge makes you very ill you have your answer and be aware that even then you could have a false negative on testing.

Nate, if you have seen some relief from D you are having signs that the diet is working for you. It can take some time for a lot of the symptoms to resolve but if you have only been on the diet for 6 days and are already seeing a reduction in D then that is a good sign that things will continue to improve.

NateJ Contributor
NateJ
Posted

Nate, if you have seen some relief from D you are having signs that the diet is working for you. It can take some time for a lot of the symptoms to resolve but if you have only been on the diet for 6 days and are already seeing a reduction in D then that is a good sign that things will continue to improve.

Thats the main reason I'm sticking to it. I think i can deal with the constant sharp pain in my stomach as the 'D' goes away. At least until I get the scopes done on the 30th. I'm just wanting to make sure its not an ulcer or whatever else would cause sharp pains there.

I have been reading some things about adhesions after surgery. But i don't a fever at all so I will just continue to wait this out. Supposed to start a new job on Monday. just hoping i can get through the days without to much pain.

ravenwoodglass Mentor
ravenwoodglass
Posted

Thats the main reason I'm sticking to it. I think i can deal with the constant sharp pain in my stomach as the 'D' goes away. At least until I get the scopes done on the 30th. I'm just wanting to make sure its not an ulcer or whatever else would cause sharp pains there.

I have been reading some things about adhesions after surgery. But i don't a fever at all so I will just continue to wait this out. Supposed to start a new job on Monday. just hoping i can get through the days without to much pain.

Are you having the scopes for celiac diagnosis? I hate to have to say this but if you are you shouldn't be going gluten free yet. I find name brand Pepto Bismal liquid to work very well for stomach pain, you may want to try it if it is something you can take. Celiac can cause ulcers and stomach irritation so if you do have them they may resolve on the diet without the aid of script antiacids.

I have had extensive adhesions throughout my abdomen due to trauma and a PT was very helpful in dealing with them. I did at one point have surgery to free them up but if you do have them they often return after surgery.

missj Rookie
missj
Posted
  • Author

36 hours with no gluten (that I know of). I had cake this afternoon around 2:30 and by 5:00 my vision was blurry and my mind was fuzzy. At dinner I had a deep fried stuffed mushroom and a slice of bread, along with my salad. It's now 8:30 and I've been nauseas since 6:30? It was about halfway through dinner that I started to feel it.

Can other food intolorences cause this stuff? Maybe it's glucose? Because also for the past 36 hours I haven't had much refined sugar...actually I haven't had any, now that I think about it. I had 2 mini mounds bars, that cake, fruit and fruit dip.

The saga continues. Oi.

ravenwoodglass Mentor
ravenwoodglass
Posted

36 hours with no gluten (that I know of). I had cake this afternoon around 2:30 and by 5:00 my vision was blurry and my mind was fuzzy. At dinner I had a deep fried stuffed mushroom and a slice of bread, along with my salad. It's now 8:30 and I've been nauseas since 6:30? It was about halfway through dinner that I started to feel it.

Can other food intolorences cause this stuff? Maybe it's glucose? Because also for the past 36 hours I haven't had much refined sugar...actually I haven't had any, now that I think about it. I had 2 mini mounds bars, that cake, fruit and fruit dip.

The saga continues. Oi.

Since you're wondering about the sugar issue keep up the gluten challenge but delete the high amounts of sugar. Personally I would think the reaction is likely from the gluten. Go with breads, stuff like triscuits, cream of wheat etc if you want to do gluten without all the sugar in cake and cookies.

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NateJ Contributor
NateJ
Posted

Are you having the scopes for celiac diagnosis? I hate to have to say this but if you are you shouldn't be going gluten free yet. I find name brand Pepto Bismal liquid to work very well for stomach pain, you may want to try it if it is something you can take. Celiac can cause ulcers and stomach irritation so if you do have them they may resolve on the diet without the aid of script antiacids.

I have had extensive adhesions throughout my abdomen due to trauma and a PT was very helpful in dealing with them. I did at one point have surgery to free them up but if you do have them they often return after surgery.

Its really to rule out everything. My GI is not certain what the cause of my pain and D are and neither am I. But after being sick for 10 years and then really really sick for the past two months my whole life is suffering.

Its like i stated earlier. If this diet works, I don't care what the test says. I'm staying off gluten.

If it doesn't work, then no harm done. I'm still having the scopes either way. I need to know what if anything structural is causing this pain.

If the tests come back negative for everything, then maybe some day in the future i will do the gluten challenge.

But i'm so sick right now i can't even think about trying anything else until they take a look.

I'm sorry but IBS or whatever other functional problem they keep telling me cannot cause my gut to be twisted into a knot for 2 straight months with no relief. And if it is IBS, its gotten worse over the last 6 months, which everyone I've ever spoken to says IBS never gets worse.

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