• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
is1985

Desperately Need Advice

Rate this topic

Recommended Posts

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 :)

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

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

  • Upvote 1

Share this post


Link to post
Share on other sites
Ads by Google:


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 :)

Share this post


Link to post
Share on other sites

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.

  • Upvote 1

Share this post


Link to post
Share on other sites


Ads by Google:


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.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,426
    • Total Posts
      941,210
  • Member Statistics

    • Total Members
      66,352
    • Most Online
      3,093

    Newest Member
    AngelBaby420
    Joined
  • Popular Now

  • Topics

  • Posts

    • It's good to know it was of use, thanks for letting me know   All the best, Matt
    • Hi Matt,   Thank you very much for a thorough response. Your link seems to cover pretty much all the questions one might have in my current situation. I appreciate it.   Have a wonderful day, Lex
    • I am worried about the cost but I think having that test done would help me rule things out. Either way I need to see a G.I my issues are getting out of control.
    • Thank you for all the information. I am sorry for the late reply to everyone. I have been feeling worse and worse lately. Got the blood test results, it came back negative. Seeing a G.I specialist in three months (too long for me :/) I've been keeping a food diary and realize I feel worse after eating gluten. After the G.I I want to start the diet. I'm going to call him and see if I can get seen sooner. The bloodwork said theres no signs of inflammation and they don't suspect it to be autoimmune but they want me to do the diet anyway. I wish I had answers because my vision is getting worse, cramping, nerve pain and trips to the bathroom are amplifying. Meh. Also I have a vitamin d deficiency so I am taking d3 2000iu with vitamin b12. Thanks for the help! 
    • I'm sorry you are dealing with this. My son deals with food intolerances that are not identified by any biomarker as well. I hear the same response from doctors in that, "if the food makes him feel bad then it's probably best to avoid the food." (Thanks for your insight doc!) His symptoms are not dermatological though. His symptoms are mostly neurological and psychiatric with some bloating and mild digestive issues. He loses his mind quite literally if he digests gluten. Also develops what is known as a stereotypy, involuntary movement of hands. He is otherwise a normal child. We are unable to obtain any kind of diagnosis though.  I know you're avoiding a lot of foods right now, but don't get discouraged. It's just a way of life and you're doing the right thing. Right now we are avoiding foods such as soy, all types of grain, chocolate, dairy and nightshades. I have limited his iodine intake as well. I have personally found that gluten, iodine and soy cause intensely itchy blisters and joint pain for me. Perhaps have you tried cutting back on iodine intake?
  • Upcoming Events