Scared Of Doing The Gluten Challenge!

[Amelia01]

I've been on the gluten-free diet since May 2007 and haven't even once cheated (patting myself on the back). My diagnosis was via biopsy (marsh II) and my bloods were always negative (even prior to gluten-free diet). Not believing the diagnosis I went for a second opinion in 2007 to a gastro doc associated with the celiac association. He was skeptical about the diagnosis and suggested I do the gluten challenge. Since I was looking to get pregnant I waved the suggestion and have remained gluten-free.

Fast forward to 2009. While inquiring if or when to give my baby gluten with Prof. Catassi (a researching gastro associated with Dr. Fassano) I gave him a brief description of my diagnosis and he too believed that it was disputable and suggested I try the gluten challenge after I finished breast feeding.

And yesterday, I went to yet another gastro doc (who heads up the celiac research at the hospital in the city where I live) and she too suggested a gluten challenge in tandem with introducing gluten to my 13 month old (who I am still breastfeeding).

PANIC!

On one hand I look forward to doing it over the holidays and not having to miss out on all the special gluten-filled treats (in moderation, of course) but on the other I don't want to be sick during the holidays.

To my knowledge I have never been accidentally glutened (although I suspect one or two incidents) so wouldn't know what to expect.

My husband is begging me to wait until after the holidays but if I am going to do it, I want some of Mom's traditional christmas cookies!

Any suggestions? If I am going to feel ill the first few times ingesting gluten due to the fact that I've been off it for so long, will additional ingestions get easier? Oh, I was pretty asymptomatic --- hence maybe not even having celiac at all.

thanks!

amelia

[Jestgar]

Everyone responds differently. There is no way of knowing what your body will do.

[SGWhiskers]

Oh, I feel for you. I understand wanting to do what is best for your baby. Maybe have Mom save some of her cookies until the 26th so you can enjoy the holiday. but for the love of a child, I can't even imagine participating in a gluten challenge.

So, since you did not have much in the way of symptoms before diagnosis, what are you hoping to learn through a gluten challenge? That is a sincere question even though it sounds a little snarky. Not meant to be.

My thought would be to have another endoscopy prior to gluten challenge and see if your body has resonded to the gluten-free diet by healing and improving your Marsh II status. My rationale is that if you were asymptomatic celiac with a Marsh II and if you improved while on gluten-free but don't have proof and then reintroduce gluten and remain asymptomatic you run the serious risk of resuming the destruction of your intestines witout knowing it. And maybe returning to a gluten diet based on the gluten symptoms that were never really symptomatic for you. (Now if you have immediate symptoms, that would be an easy situation to figure out, but YOU can't be sure how your body will react. )

Double check back wiht your initial seronegative diagnosis and make sure they ran all the tests listed on the link on the front right of the celiac.com site including the total IGA. Also make sure you see the results with your own eyes.

As far as Marsh scores, Are their conditions other than celiac that cause flattened villi? I truly don't know. In the old days, there was a protocol that was along the lines of endoscopy, gluten free diet, endoscopy gluten challenge for a long time and then endoscopy again for a definitive diagonosis. I think the process took a year or so to complete. I think now, physicians are happy with either blood or endoscopy or both for definitive diagnosis and omit the gluten challenge.

Best wishes to you and I wish you well with your challenge and especially with your little one.

[maddycat]

I am curious if you have started your challenge yet? I am in a similar situation as you...I was diagnosed Celiac after the birth of my first son (was breastfeeding at the time). Did not have an endoscopy only borderline positive blood work results for diagnosis. I have now been gluten free for over 3 years and have a second son who is 9 months old (I only had 6 months where I wasn't nursing or pregnant since my diagnosis!). I would really like to do a gluten challenge but don't think it would be a good thing to do while nursing. I would worry about my baby getting the nutrients needed through the breastmilk if I start not absorbing what I need to (if affected by gluten consumption with Celiac Disease). What is the rationale that your dr thinks it is ok to do while breastfeeding? Just curious.

Please keep us posted on how things go!

Marcia