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Desperately Need Advice


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7 replies to this topic

#1 is1985

 
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Posted 22 January 2011 - 11:41 AM

hello everyone,
i'm a new member and this is my first post. i joined because i really need advice on how to proceed now.
if you'll bear with me - ill describe my situation :)

two months ago i received a blood test with a 10.4 U/ml TransGlutaminase (IgA) Ab. i was told by my doctor that
this is a sign for celiac disease and that i should take an endoscopy to make sure
i have not yet had the time to undergo the procedure, but meanwhile i have reduced my gluten intake, and for about a month now i've been gluten free - though i have made the occasional mistake on that account.
anyway - the problem is i'm not feeling any better. i did for a while, but since then it seems like everything has gotten worse. the reason i had a blood test in the first place is because i've been feeling bad for about 2 years: nausea, dizziness, palpitations. i was sure it was some sort of virus or parasite since i was at the time just after a long trip in india. stool tests and such found nothing - and then suddenly this celiac diagnosis.
since going gluten free every single symptom has become worse - especially nausea and dizziness. i can't fathom any reason why this should be so - how can reducing my gluten intake, celiac or not, make my symptoms worse?!
anyway - i'm really exasperated, i'm not sure what to eat or what to avoid. i am continuing testing - i have yet to see a dietitian or a gastrologist for further diagnosis, but this takes a long time and i feel like i really need some sort of immediate guidance.

i apologize for such a long winded description, but i feel the need to describe things in their entirety. any and all replies will be greatly appreciated :)
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#2 gary'sgirl

 
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Posted 22 January 2011 - 01:02 PM

hello everyone,
i'm a new member and this is my first post. i joined because i really need advice on how to proceed now.
if you'll bear with me - ill describe my situation :)

two months ago i received a blood test with a 10.4 U/ml TransGlutaminase (IgA) Ab. i was told by my doctor that
this is a sign for celiac disease and that i should take an endoscopy to make sure
i have not yet had the time to undergo the procedure, but meanwhile i have reduced my gluten intake, and for about a month now i've been gluten free - though i have made the occasional mistake on that account.
anyway - the problem is i'm not feeling any better. i did for a while, but since then it seems like everything has gotten worse. the reason i had a blood test in the first place is because i've been feeling bad for about 2 years: nausea, dizziness, palpitations. i was sure it was some sort of virus or parasite since i was at the time just after a long trip in india. stool tests and such found nothing - and then suddenly this celiac diagnosis.
since going gluten free every single symptom has become worse - especially nausea and dizziness. i can't fathom any reason why this should be so - how can reducing my gluten intake, celiac or not, make my symptoms worse?!
anyway - i'm really exasperated, i'm not sure what to eat or what to avoid. i am continuing testing - i have yet to see a dietitian or a gastrologist for further diagnosis, but this takes a long time and i feel like i really need some sort of immediate guidance.

i apologize for such a long winded description, but i feel the need to describe things in their entirety. any and all replies will be greatly appreciated :)

I was diagnosed through biopsy from an endoscopy procedure. All of my symptoms became worse after going gluten free. (I had similar symptoms as you) I finally heard about going grain free and found out about the Specific Carbohydrate diet. I had been gluten free for almost a year when i started the SCD and I started to see signs of improvement within the first couple of weeks after I started it. I still have a long way to go, but I am happy that I found something that is finally working - even though it is a slow recovery.

I also want to point out that if you have gone off of gluten an endoscopy will not be accurate. You have to be eating a large amount of gluten every day (at least 4 servings, ie: 4 slices of bread) for at least 2-3 months prior to getting the endo procedure if you want the results to have any chance of being accurate.

Personally, I think that going back on gluten after having taken it out of your diet can be very detrimental to the healing process, and possibly even take longer to heal. Before putting yourself through that make sure it's something you feel you really need to do.

~Sarah

P.S. If you have any questions about going grain free or anything else, I am happy to help if I can.
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#3 is1985

 
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Posted 22 January 2011 - 01:41 PM

I was diagnosed through biopsy from an endoscopy procedure. All of my symptoms became worse after going gluten free. (I had similar symptoms as you) I finally heard about going grain free and found out about the Specific Carbohydrate diet. I had been gluten free for almost a year when i started the SCD and I started to see signs of improvement within the first couple of weeks after I started it. I still have a long way to go, but I am happy that I found something that is finally working - even though it is a slow recovery.

I also want to point out that if you have gone off of gluten an endoscopy will not be accurate. You have to be eating a large amount of gluten every day (at least 4 servings, ie: 4 slices of bread) for at least 2-3 months prior to getting the endo procedure if you want the results to have any chance of being accurate.

Personally, I think that going back on gluten after having taken it out of your diet can be very detrimental to the healing process, and possibly even take longer to heal. Before putting yourself through that make sure it's something you feel you really need to do.

~Sarah

P.S. If you have any questions about going grain free or anything else, I am happy to help if I can.


hi, thanks very much for the reply!

i will definitely be taking the endo at some point, i have to get an accurate reading if its celiac or not. given that - do you think i should re-introduce gluten to my diet? (gradually maybe, or in any way). im still not gluten free by any real standard, but im maybe 85% there.
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#4 sb2178

 
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Posted 22 January 2011 - 01:53 PM

Have you done things like eliminate contamination from old cookware and such? Even the breadcrumbs or flour dust in the silverware drawer can lead to continued symptoms. Eating entirely unprocessed foods can also be helpful, as many gluten-free processed products have very low levels of gluten present and/or unfamiliar ingredients that you could be reacting to.
Read more on the board for suggestions on what to remove/replace.

Many people also need to take out dairy, at least for a little while.

Finally, neuro stuff generally takes longer to resolve than GI symptoms. It took me a while to really get everything settled, but it was also clear that I was actually getting better. You'll get a hold of it, eventually, and then you'll feel better!
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2/2010 Malabsorption becomes dramatically noticable
3/2010 Negative IgA EMA; negative IgA TTG
4/2010 Negative biopsy
5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)
5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?

#5 cassP

 
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Posted 22 January 2011 - 09:09 PM

1st- if you're only 85% off gluten- your symptoms may never improve... it's not always a cumulative effect, sometimes if they antibodies are awake- then they're active and causing damage either in the gut, skin, or in the brain.

and yes- if you're going to get a biopsy done- you need to be eating like 4-6 slices of bread for 1-3 months.

it's also quite possible that you may have contracted a virus or parasite, and then it "triggered" Celiac.

hhmmm, good luck with your decisions
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1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#6 is1985

 
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Posted 23 January 2011 - 12:41 AM

1st- if you're only 85% off gluten- your symptoms may never improve... it's not always a cumulative effect, sometimes if they antibodies are awake- then they're active and causing damage either in the gut, skin, or in the brain.

and yes- if you're going to get a biopsy done- you need to be eating like 4-6 slices of bread for 1-3 months.

it's also quite possible that you may have contracted a virus or parasite, and then it "triggered" Celiac.

hhmmm, good luck with your decisions


Hi cass,
thanks for the advice :)
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#7 gary'sgirl

 
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Posted 23 January 2011 - 08:58 AM

hi, thanks very much for the reply!

i will definitely be taking the endo at some point, i have to get an accurate reading if its celiac or not. given that - do you think i should re-introduce gluten to my diet? (gradually maybe, or in any way). im still not gluten free by any real standard, but im maybe 85% there.

If I were in your shoes, and wanted the endo to be as accurate as possible, then I would schedule the appointment for 3 months away and start eating - at the very least - the equivalent to 4 slices of bread a day, probably more. I think that would be your best bet for getting the most accurate results as possible.

If you think that it will take you more like six months to get the test done, you could try taking gluten completely out of your diet and be really careful about CC. If your symptoms improve and you start feeling better you might have a worse reaction when you reintroduce the gluten again, but you also may feel that you are so much better that you won't even want to do the test and feel confident in the dietary results.
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#8 Dr. Keiser

 
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Posted 23 January 2011 - 09:03 PM

That's great advice. Especially since it came on so quickly (after a trip to India) the is a good chance that it could have been triggered by a vector. An endoscopy or biopsy is looking for "villus atrophy" which can take a while to progress enough to show a positive test.

Rather than wait until enough of your GI system is destroyed, you may find committing to a 100% gluten free diet (doesn't matter if its a crouton or a loaf of bread, if it gets in your body, your immune system is going to sound the alarm), eliminating other food allergens and doing a little more probing for infections may give some good answers.
You sound like you are doing well trying to get the hang of things. Keep after it, be your own advocate and you'll do great.
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