Questions About Gluten Challenge In 3 Year Old

[mom-to-claire]

I posted something similar in the babies and kids section but wanted to come here too. My 3 year old daughter has suffered from various things in her short life and while we were struggling to figure out what her problems were and find a diagnosis, I put her on a gluten free diet without getting her tested first. She was only 10 months old when we did this. As time has gone by we think that we have figured out what she's been suffering from all this time. The doctors believe she has something called Familial Mediterranean Fever (FMF) it is a Period Fever Syndrome which is an auto inflammatory disease. She was started on some medication in October and has not had a prolonged fever attack since then. she has seen MANY doctors in her 3 years of life including a pediatric GI who never really thought her symptoms pointed to Celiac but suggested we keep her that way since it seemed to be helping in certain ways but not others. ANYWAY...now that we have a pretty firm diagnosis which would explain many of her symptoms that we thought were related to gluten, we got the go ahead to do a challenge. We are 2 weeks into it and I think things are going well but she's had various issues that could be related to so many things. She is in daycare full time so she picks things up all the time. She has had some loose BMs in the past few days but they are not frequent. In fact she might only have 2-3 per day (her usual) but they border on diarrhea. She sometimes mentions her tummy is sore but it hasn't stopped her from being active or eating. Her appetite has actually increased since starting on gluten. Right now she has this weird redness on her face and under her eyes. It might be Fifth disease since it seems to be going around and she did have one low grade fever this week. I've never heard of a reaction like this to gluten but I guess it could be.

My problem is that stomach pain, diarrhea, fevers etc are all common with FMF. She is going to have blood work done in May (she had baseline blood work done in early February) and if it is normal they aren't going to do an endoscopy until January 2010.

My gut tells me she doesn't have Celiac or a gluten intolerance but I'm afraid that waiting a full year to do a scope is too long in case she does. I don't want to put her through a biopsy unnecessarily (she had to have at least 3 procedures where she's been under a general anestetic (sp?)) I guess I'm just babbling here because I'm not really sure what I need answered.

I guess here are my main questions.

1. If after 2 weeks we aren't seeing a significant reaction is it pretty safe to say we won't see one?

2. Even if the blood work is negative and she doesn't have symptoms, do you think we should insist on a scope before January 2010?

3. has anyone ever had red cheeks/eyes from being glutened..this didn't start right away, it was after a full week on gluten

4. Has anyone ever heard of people who have FMF and was there any correlation to gluten?

Thanks

Karen

[Fiddle-Faddle]

I have never heard of FMF, so I googled it.

I found this: Open Original Shared Link

so it does sound like there might be a link with celiac.

Many of us have weird redness on our faces. Rosacea is common amongst celiacs, and is autoimmune in nature.

If your daughter is having loose bm's now, and wasn't before the challenge, I'd say that she IS reacting to the challenge. Not all of us react horribly to gluten. I think the less damage that was done to the intestines before going off gluten, the less severely one reacts to gluten after healing. If your daughter was gluten-free at 10 months, that's over 10 years less damage to her intestines than the average American celiac! (The 2006 U of Chicago study says that it takes an average of 11 years to get a diagnosis of celiac.)

Seriously, though, you may very well have protected her from really severe reactions to gluten by making her gluten-free so early, with or without celiac disease. And this FMF seems to share some aspects with celiac, so IMHO, keeping her off gluten is a GOOD thing, not a bad thing. If this FMF is an autoimmune disease, gluten is the last thing you'd want to give her.

You might want to have her off dairy as well, or at least make sure that any dairy product she eats or drinks is organic--the non-organic stuff is laced with pesticides, hormones, and antibiotics. Oh--and please be VERY VERY VERY careful not to let them give her ANY vaccines when she has any fever or is in a "flare" of of FMF, and only let them give her one vaccine at a time (with 3 MONTHS between vaccines). The kids who have vaccines given when they have a fever seem to be the ones who have terrible, terrible reactions to the vaccines, sometime fatal.

There are many vaccines you can delay until she is much older, such as the hepatitis B vaccine if she hasn't already completed that one (I think it's 3 or 4 shots). Hepatitis B is mainly transmitted through unprotected sex and shared IV needles, so it's not likely that she would be at risk to develop the disease, but some babies have died from the vaccine.

Best of luck to you and her, welcome aboard, and please keep us posted on how she is doing, okay?

[david2000]

I posted more details on two other threads right by yours, but to quickly answer there is a genetic blood test that can be done that will let you know if it is even possible that she has celiac. Good luck!

[mom-to-claire]

Thank you for your reply. I must correct something though....FMF is not an auto immune disease it is an auto inflammatory disease which is quite different. She has been seen a few times by an immunologist and they are satisfied she does not suffer from any auto immune disease (with the exception of possibly celiac I guess).

I'll have to read the link you have provided.

My entire family (me, my husband and son) all had the blood work done for Celiac at the time we were trying to figure out if Claire had it and we all came back negative. None of us have symptoms. We only did the blood work because we knew that Celiac runs in families. I know that doesn't mean she doesn't have it but at least it rules us out.

Her face seems better today and she hasn't had a BM yet today. We'll see how the rest of the weekend goes. My thought was that since she is being introduced to new foods it may take awhile for her to get used to them, just like any food regardless of the gluten content. maybe I'm just naive or have wishful thinking!

[Fiddle-Faddle]

I posted more details on two other threads right by yours, but to quickly answer there is a genetic blood test that can be done that will let you know if it is even possible that she has celiac. Good luck!

In the US, 2 genes are recognized as being markers for propensity to develop celiac disease.

In Europe and Asia, SEVEN genes are recognized as such. If you get a doctor who follows the AMA, they will tell you differently from the European and Asian doctors.

There are quite a few members on this board who DO have biopsy-confirmed celiac disease, but who do NOT have the 2 genes recognized by the US doctors as "celiac" genes.

A genetic blood test can NOT rule celiac out, and can NOT let you know whether or not it's possible that she has celiac.

[Fiddle-Faddle]

Thank you for your reply. I must correct something though....FMF is not an auto immune disease it is an auto inflammatory disease which is quite different.

Whoops, sorry about the misunderstanding.

Sounds like you've got your hands full, either way. Is she old enough to go on the colchisine?

[mom-to-claire]

Whoops, sorry about the misunderstanding.

Sounds like you've got your hands full, either way. Is she old enough to go on the colchisine?

Yes she has been on colchicine since October and her fever attacks or "flare" have been pretty much non existent since then. She's had 3-4 minor fevers less than 24 hours which is a HUGE difference. She is doing great. And even since going back on gluten she seems to have more of an appetite, her mood seems different in a good way and there are no negative effects except for the last couple days of diarrhea. It isn't more frequent just looser. She had a semi-solid one today so we'll see what the next few days bring.

[Fiddle-Faddle]

My husband was on colchicine for gout (which is autoimmune, I believe). He found that it did reduce occurrences, but if he wasn't careful to drink enough, his kidneys would hurt, so he stopped taking it.

I don't know if there are any other side effects. Is there a support site/forum for the FMF?

Gluten definitely gives me both more appetite and more thirst, but I don't know why. It also gave me alternating looser stools (not severe D unless I ate a ton of pasta or cake) and mild constipation--neither was enough to make me think I had intestinal problems. It wasn't until I went OFF gluten that I realized what had been going on (kind of like, "Oh, THAT'S what a normal poop is supposed to be like!").

[sameer]

I posted something similar in the babies and kids section but wanted to come here too. My 3 year old daughter has suffered from various things in her short life and while we were struggling to figure out what her problems were and find a diagnosis, I put her on a gluten free diet without getting her tested first. She was only 10 months old when we did this. As time has gone by we think that we have figured out what she's been suffering from all this time. The doctors believe she has something called Familial Mediterranean Fever (FMF) it is a Period Fever Syndrome which is an auto inflammatory disease. She was started on some medication in October and has not had a prolonged fever attack since then. she has seen MANY doctors in her 3 years of life including a pediatric GI who never really thought her symptoms pointed to Celiac but suggested we keep her that way since it seemed to be helping in certain ways but not others. ANYWAY...now that we have a pretty firm diagnosis which would explain many of her symptoms that we thought were related to gluten, we got the go ahead to do a challenge. We are 2 weeks into it and I think things are going well but she's had various issues that could be related to so many things. She is in daycare full time so she picks things up all the time. She has had some loose BMs in the past few days but they are not frequent. In fact she might only have 2-3 per day (her usual) but they border on diarrhea. She sometimes mentions her tummy is sore but it hasn't stopped her from being active or eating. Her appetite has actually increased since starting on gluten. Right now she has this weird redness on her face and under her eyes. It might be Fifth disease since it seems to be going around and she did have one low grade fever this week. I've never heard of a reaction like this to gluten but I guess it could be.

My problem is that stomach pain, diarrhea, fevers etc are all common with FMF. She is going to have blood work done in May (she had baseline blood work done in early February) and if it is normal they aren't going to do an endoscopy until January 2010.

My gut tells me she doesn't have Celiac or a gluten intolerance but I'm afraid that waiting a full year to do a scope is too long in case she does. I don't want to put her through a biopsy unnecessarily (she had to have at least 3 procedures where she's been under a general anestetic (sp?)) I guess I'm just babbling here because I'm not really sure what I need answered.

I guess here are my main questions.

1. If after 2 weeks we aren't seeing a significant reaction is it pretty safe to say we won't see one?

2. Even if the blood work is negative and she doesn't have symptoms, do you think we should insist on a scope before January 2010?

3. has anyone ever had red cheeks/eyes from being glutened..this didn't start right away, it was after a full week on gluten

4. Has anyone ever heard of people who have FMF and was there any correlation to gluten?

Thanks

Karen

I am hoping this is not too late; i would like to learn of how is your child doing with FMF? i just learned that going Gluten free for at least 2 years (we have 8 cases so far) will have %100 remission of FMF. Nobody was able to get there before the 2 years. I just started my kids Gluten free diet last week.

[GF Lover]

I am hoping this is not too late; i would like to learn of how is your child doing with FMF? i just learned that going Gluten free for at least 2 years (we have 8 cases so far) will have %100 remission of FMF. Nobody was able to get there before the 2 years. I just started my kids Gluten free diet last week.

Hi sameer,

 

Unfortunately, the user you quoted has not been on the Forum since May of 2009.  Feel free to start a new topic.

 

Welcome,

 

Colleen