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Unresponsive Celiac?

momof2

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momof2 Explorer
momof2
Posted

We had a checkup at the GI Dr. and found out she has lost weight again. She has fallen off the charts, like during her diagnosis phase. She is acting happy at home, developing fine! I am not sure what to think of it. The Dr. ordered blood tests to check her IGA levels, and she said there is a small percentage of Celiacs that are "non-responsive." I didn't have a chance to ask her what that meant, because at that moment, my 19 month old darted out of her office and was impossible to hold after that. So, can any of you tell me what this might mean if she is one of the small percentage that is called this?

Thanks!

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celiac3270 Collaborator
celiac3270
Posted

Momof2,

I think what your doctor is suggesting is refractory sprue...when the body and the villi do not respond to the gluten-free diet. Before you can determine it is this, though, you need to look at a lot of other possible factors, such as that your daughter might be getting glutened somehow, preventing her villi from healing and making it SEEM like she has refractory sprue.

Canadian Karen was told she had refractory sprue a few months ago, and it turned out she was using Gas-X, which has gluten, thus, the misdiagnosis. There are articles on this site about refractory and if you do a search, I'm sure you could find some more information on this. Here's one article on refractory sprue from this site: https://www.celiac.com/st_prod.html?p_prodi...-47104083536.c8

Here's a bit about it:

What is refractory sprue?

This question has been the subject of great scientific inquiry, and there are differing opinions on the relationship between celiac disease and refractory sprue. However, there are several general characteristics of refractory sprue that researchers seem to agree on:

- Presence of persistently damaged villi in the small intestine that are not repaired after the gluten free diet has been successfully initiated and/or maintained

- An increased presence of intraepithelial lymphocytes (IEL) in the small bowel

- Severe malabsorption

I'm not sure if this is it, but it might be what he was referring to.

-celiac3270

ryebaby0 Enthusiast
ryebaby0
Posted

I agree with celiac3270, your GI is thinking of refractory sprue. My son was dx at one point w/ this, but as the articles will tell you, it is very rare. The specialist who did our workup at Johns Hopkins said she believes there is no such thing. (Turned out he had something even MORE rare, but that's another story)

Practically speaking, has your daughter been thoroughly checked for other food issues? Other allergies or intolerances? Are her meds gluten free? Vitamins? Fingerpaints and playdoh? Is she dairy-free for a nice long time, maybe soy free as well? Many celiacs have food allergies as well. Don't be scared by all the poor prognosis attached to refractory sprue -- it is much, much more likely that she has something else going on -- unseen gluten, or an allergy.

Let us know how it goes. Doctors try, but many just don't know a whole lot about gluten and celiac, so don't be too sure that yours is correct.

Joanna

mom and wife to celiacs

Canadian Karen Community Regular
Canadian Karen
Posted

Hi!

I saw your post a few days ago, but only today had a few minutes of relative peace and quiet to get onto the computer to reply. (I have four kids, 11 yr old girl, 6 yr old girl and 3 yr old twin boys....) Needless to say, Christmas is absolute madness at our house!!!!

I looked back and found the original thread about when I was told I might have refractory sprue...... There are some really good links to read up on in this thread.

There were alot of reports that I read that really put my mind at ease and to explain just how unlikely it is that it was refractory.... In my case, we ended up finding a few things that I was continuing to take that ended up having gluten. Gas-X was one of them, Clamato juice was another. Also, my GI specialist prescribed Lomotil for my chronic diarrhea, and after having a reaction, found out that Lomotil contained gluten!! Just goes to show you that the doctors are not even totally up to date on what contains gluten and what doesn't....

Also, when my GI dr. sent me down to a professor who specialized in celiac, that's also when we found out that I have collagenous colitis. So that explains why I have had chronic permanent diarrhea for years now. I am currently on the first treatment for collagenous colitis, but it is not working, although the professor did indicate to me that not every treatment works for everyone and that we have to keep trying until something works for me.....

I hope when you read this thread, your fears might be put to rest.... There are soooo many more possibilities that the dr. should consider before giving you the "unresponsive" label.

Any questions you need to ask, go ahead, ask away, after all, I've "been there done that"!!!!

Here is the link:

Open Original Shared Link

Have a wonderful day!

Karen

lovegrov Collaborator
lovegrov
Posted

Not only is refractory sprue unlikely in anybody, it's even more unlikely in somebody this young. This is probably not the problem.

richard

momof2 Explorer
momof2
Posted
  • Author

Thank you all for your replies! It puts my mind at ease in one sense, but freaks me out in another! It is very likely she is getting some form of gluten somewhere, and now I guess it is my job to locate it! She is only 19 months, so everything ends up in her mouth. Her sister routinely drops cereal on the floor, and neglects to pick it up (a 4 year old). So, that will be my first job! Secondly, I am hoping and praying that is the reason why she is losing weight once again. This gluten free diet is a bit challenging for us, and so I am praying there is not another allergy that she will have to live with, and we will have to learn about.

I will let you all know what the test results indicate!

Thanks!

Christi

  • 2 weeks later...
momof2 Explorer
momof2
Posted
  • Author

Update!

Her tests came back normal! She must be moving so much lately, that she has lost the weight that way!

We go back in 2 months for another check up...I am sure everything will be fine!

Thanks for the replies.

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lovegrov Collaborator
lovegrov
Posted

GOOD NEWS!!!

This is a lesson for all. Refractory sprue is rarely an acceptable diagnosis. In almost all cases, something else is happening.

richard

Guest tmkramlick
Guest tmkramlick
Posted

My daughter was also diagnosed with Celiac when she was 14 months, 4 months on a gluten-free diet and her IgA level was higher than the original #. She was up to 218. I went over her whole diet bought new pots & pans I really couldn't pinpoint where she was getting gluten from. Now 9 months after the first her IgA level is now only down to 208. The nurse from the GI office said it should be down between 0-19. Two months ago we confirmed that she has some food allergies to corn & dairy. She has had a terrible rash all over. Does anyone have any ideas why her levels would be so high still. I know she ate one goldfish about 3 weeks before the blood test.

Thanks,

Terry

lovegrov Collaborator
lovegrov
Posted

Bacterial overgrowth will mimic celiac disease, although I don't know if it keeps the Iga levels up. You might ask your doctor about bacterial overgrowth and whether your daughter should try a probiotic. Not sure if it's advised for one so young.

Somewhere out there I've seen a list of possible other causes for an elevated Iga but I can't find it.

richard

  • 2 weeks later...
Boojca Apprentice
Boojca
Posted

Christi,

You may want to also consider having only gluten-free "finger foods" for a while, until both children can understand. If your older daughter is dropping food, and your younger is getting it, it would just be easier to be totally gluten-free for the time being. Isn't this FUNN???? My son is 3, so I hear you....

Bridget

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