Is A Gluten Challenge Worth It?

[PattiD2]

My 13 year old DD has been quite sick with severe stomach pain and occasional hives and diarrhea since January. She had an endoscopy in March, where they diagnosed eosinophilic esophagitis which is an allergic type inflammation in her throat. The treatment for that did help the swelling in her throat but it did not help the stomach pain so the GI doctor ran a celiac panel. Her tTg was positive so she went back and reviewed the biopsies stating that they show some lymphocyte changes that could be consistent with celiac disease. She has been on a gluten-free diet for almost 3 months, although we did not see much improvement until 5-6 weeks into it. She has been incredibly compliant with the diet but I'm sure we did not know as much in the beginning as we do now. She (and I) are convinced that the diet is helping but she is not feeling 100% better. On Monday, she had an endoscopy/colonoscopy with multiple biopsies for the eosinophils and celiac. Everything looked great and came back normal except her esophagus which is pretty much the same as last time. They re-ran the tTG and it is now back down to normal. So, the doctor and my husband have been talking about a gluten challenge to confirm the diagnosis of celiac disease, admitting that we should not do it soon so she can be healthy and attend as much school as possible this fall. My daughter is totally against it and I can't blame her. She is finally starting to feel better so she doesn't want to go back to those stomach aches. I'm thinking that we can just put it off until next summer, then maybe we'll decide to wait a little longer and eventually there will be better testing than putting her back on gluten to see the damage that is being caused.

What would you do? Is our doctor up to date that she needs to have a gluten challenge? Is a delayed, substantial but not complete dietary response enough or do we need more?

My husband has had stomach problems, migraines and other unexplained medical issues that are consistent with celiac for many years. His doctor ran the tTg without running the entire celiac panel and it came back negative. We both think that it is likely that he has celiac so he is wondering what to do next. Should he go back and have the whole celiac panel read? We have adapted our diet to have more gluten free meals but he eats cereal, lunch and regular pasta. Could the other changes in the diet cause the negative tTG?

[happygirl]

This is just my opinion, and not medical advice.

I would NOT re-test your daughter. She had a positive tTG. She has had some improvement in her symptoms on the gluten-free diet. She is still having symptoms, even on a gluten-free diet. This to me, indicates that there is something else going on, and I wonder if she has any of the other Eos. disorders. Did they look for eos in her small intestine and colon? Is your dr. an expert in EE? If not, I would find a highly knowledgable dr. in that area, that will further examine her and do other food allergy testing, at the very least. Have you checked out the info on www.apfed.org ?

Keep in mind that you do not need a dr's permission or "diagnosis" to stick to the diet. If it is helping your child, then I think it is worth sticking with it. Being on the gluten-free diet isn't hurting her.

And, I would run the full panel on your husband, given his symptoms.

Best of luck.

[PattiD2]

Our GI doctor was trained at Cincinnati so she is very familiar with EE. She did have biopsies taken for EGE and they came back without eos. Slides from her first endoscopy were sent to Cinicinnati for a second opinion. They agreed with the EE diagnosis but suggested further celiac testing because they didn't think it was EGE.

She is on zantac, zyrtec, prilosec and singular which have stopped her big allergic reactions where she would have excruciating stomach pain, diarrhea, vomiting and hives that covered her entire trunk. She does swallowed flovent to help with the EE.

She has been having stomach problems off and on for years, but about 1 1/2 years ago it started happening every four weeks or so for several days with a big episode of hives, etc. Starting in January, she was sick more often than not which caused her to miss at least half of the days of school. My theory is that she was having EE problems which seem to be made worse by hormones. In May, she was having numbness in her arms, achy knees, aoften a feeling of needing to urinate all of the time and an elevated ANA. At the height of the problem, I think she started having problems with gluten. Going gluten-free has given her some days relatively pain free but she seems to be very susceptible to any virus around. In addition, she started her period this summer and has incredibly painful cramping and sore back during that period. Her numbness has gone away but her knees have been very bad this week. She had the urinating sensation last week again.

She has had numerous allergy testing which has all been negative. We have talked about taking her to Milwaukee for patch testing since our allergist will not do it for us. She has had severe stomach pain and some itching after being in the barn with our horses. Wearing a mask and riding outside has allowed her to be out there occasionally but she will not try it unless she is feeling really good. She had environmental allergy testing done in June but the week off of zantac, zyrtec and benadryl was miserable with low to mid grade stomach pain the entire time, even when she was careful about the barn. I'm not sure I'm ready to take her off the allergy meds to do the patch testing before school starts. I do think that we should try to figure out the trigger for the EE but not quite sure what to do next. Right now, I think we are ok with keeping her gluten-free, on allergy meds and flovent so she can be a middle school kid again, hopefully without too much pain or too many issues.

[happygirl]

Patti,

I am happy that you have a dr related to Cincy....so many drs know little to nothing about it, unfortunately.

Have your doctors come up with an explanation for the elevated ANA, which is indicative of autoimmune disorders? Does the EE cause it to be elevated?

Have you tried doing an elimination diet? She might not be allergic in the IgE sense, but could be IgG related. It might be worth it to go down to a very, very simple and basic diet, and then add items back in, to see if there are other food issues.

Has she had any bug bites or rashes? Tested for RA, MS, lupus, etc?

I'm assuming they checked for Crohn's, ulcerative colitis, microscopic colitis? H. pylori? bacterial overgrowth?

Wow, Patti, I wish I had some better answers for you and your sweet daughter. I hope that someone on here has some ideas, and that you find some much needed answers and relief for your daughter.

[kbtoyssni]

I wouldn't do it. If you've seen an improvement, I think you've got your answer. If she's still feeling badly, though, you might want to look for other issues.

[PattiD2]

She has been tested for everything that you mentioned. She is seeing a very good rheumotologist who has been evaluating her other autoimmune symptoms. They were concerned about the elevated ANA but it came down shortly after she started gluten-free and has stayed down. Thankfully, she has tested negative to Lupus, RA, crohns, etc. She saw an ophthalmologist because they can often see vascular changes in earlier in the eyes. Her eyes looked normal but she does have an unusual small cyst in her eyebrow that she is having removed in October. They don't think it is anything to be worried about but they will biopsy it to make sure.

She was on the elimination diet for two weeks without any changes at all. In retrospect, it was way too short of a test but this was in the height of her symptoms getting worse and it wasn't helping at all. She had a six week course of prednisone but that didn't help the stomach pain but probably did help the EE. The gluten-free diet is the only thing that has made any difference in the stomach pain.

[ravenwoodglass]

I would not do a gluten challenge. She has already been identified as having a problem with gluten and there is no reason IMHO to poison her. Being gluten-free is not going to mask any other conditions although it may relieve them. I would also make sure she is wearing a dust mask, gloves and changes clothes, showers and washes her hair as soon as she is done in the barn, every single time.

[Jestgar]

  PattiD2 said:

Her tTg was positive so she went back and reviewed the biopsies stating that they show some lymphocyte changes that could be consistent with celiac disease. She has been on a gluten-free diet for almost 3 months, although we did not see much improvement until 5-6 weeks into it. She has been incredibly compliant with the diet but I'm sure we did not know as much in the beginning as we do now. She (and I) are convinced that the diet is helping but she is not feeling 100% better.

They re-ran the tTG and it is now back down to normal.

My daughter is totally against it and I can't blame her. She is finally starting to feel better so she doesn't want to go back to those stomach aches.

  PattiD2 said:

Going gluten-free has given her some days relatively pain free but she seems to be very susceptible to any virus around. Her numbness has gone away but her knees have been very bad this week.

  PattiD2 said:

They were concerned about the elevated ANA but it came down shortly after she started gluten-free and has stayed down.

The gluten-free diet is the only thing that has made any difference in the stomach pain.

What part of what you've said so far makes you think that recreating all these problems in her is a good idea?

[gfpaperdoll]

That girl sounds "fragile" & I would NEVER do a gluten challenge on her.

If you want more testing go thru Enterolab.com & get their tests & check the genes also.

I would aslo get all the allergy testing (I am a lifelong sufferer of food allergies). along with that I would read the book "Eat Right for your Blood type" not a gluten free book, but I just crossed out the dairy & gluten parts.

Also, have you eliminated dairy & grains??? the nightsahde family of foods?

Has she been tested for Lyme? I do not know anything about Lyme, but I do know that a lot of people have it.

(& President Bush was treated for it last year)

remeber no one really needs gluten or dairy...

[JennyC]

I'm sorry that I don't have anything more intelligent to say, but I would not do the gluten challenge. The does not sound like she is medically stable enough. Also, she's 13 and IMHO she's old enough to make that decision for herself. She's the one who has to live the life style and also the one who would have to endure the challenge first hand.