Advice On Gluten Free Trial And Challenge....unsure About Symptoms

[gorgemom]

Hello,

 

My family and I recently decided to do a gluten free trial due to health problems in my children who tested negative for for celiac but have asthma, reflux and some other issues we are concerned about with an intolerance. I have a long history of bowel problems, joint pain etc, so it made sense for me to try it as well. I have not been tested!

So, we did the gluten free trial for one month during which time all of my bloatedness disappeared, I had regular bowels for the first time in forever and I just felt better mentally! 

My son's asthma symptoms seemed to improve and I actually took him off of his long acting inhaler a week ago with no problem.

 

This last weekend we decided to do a challenge and eat gluten to see if our symptoms came back. Within an hour of eating gluten on Friday, I had cramping and loose bowels. Of course we had fast food so I thought maybe, just maybe it was coincidence and it was the grease not the gluten. So Saturday I had more and by that evening I had a horrid headache! (Hadn't had one like that in the last 3 months or more). My stomach was still bothering me. My kids didn't really notice anything.

 

Then Sunday, I tried again, ate more gluten and my stomach was still bothering me, but but not horribly. 

We noticed Sunday night that our son was beginning to exhibit some shortness of breath after exercising so my husband and I decided we would go back on the gluten free diet Monday (today). 

 

That brings me to today. My stomach felt kind of swimmy this morning, I am dizzy and foggy. I ate lunch which was something I normally would eat, not gluten! And I am having horrible stomach aches now and some loose bowels. I am thinking that the gluten is doing a number on my system! Is it possible my stomach is still irritated from the gluten over the weekend? How long can this last? If I wasn't doing a gluten challenge I would think I had a stomach virus! These are stomach aches I have not had before! Any thoughts?

 

[LauraTX]

Hi Goregemom, and welcome to the forum!  Generally, the point of a gluten challenge is to make a proper diagnosis possible.  Before you go back gluten-free, you may want to look into getting yourself tested.  Also, do you know what tests were ran on the kids?  The fact that the kids show improvement on a gluten-free diet means they may have Non Celiac Gluten Intolerance, but if they haven't seen a GI specialist, you may still want to take them to one.   Sometimes people eat healthier once they go gluten-free and the improvements are from that.  Either way, especially when kids and their school is involved, you are going to want to get an official recommendation from a doctor so you can have it documented. 

[gorgemom]

My kids had a blood test done and they also both had intestinal biopsy's. As for me, there is no way I can eat gluten again! I have been miserable this weekend since putting gluten back in my diet. I guess it really isn't important to me to have a diagnosis if I know that I feel better when I take it out of my diet. I have a lot of other symptoms I am hoping will go away with the gluten free diet, hair loss, keratosis pilaris rash, chronic anemia, some vitamin deficiencies etc. 

I guess what I was wondering is if the intestinal reaction I had when trying gluten again after a month is typical of someone with a gluten intolerance or celiac? The only other possibility would be a stomach virus that just happened to start immediately after eating gluten and has lasted 3 days now. Has anyone else had this type of reaction? 

 

 

Hi Goregemom, and welcome to the forum!  Generally, the point of a gluten challenge is to make a proper diagnosis possible.  Before you go back gluten-free, you may want to look into getting yourself tested.  Also, do you know what tests were ran on the kids?  The fact that the kids show improvement on a gluten-free diet means they may have Non Celiac Gluten Intolerance, but if they haven't seen a GI specialist, you may still want to take them to one.   Sometimes people eat healthier once they go gluten-free and the improvements are from that.  Either way, especially when kids and their school is involved, you are going to want to get an official recommendation from a doctor so you can have it documented. 

[Donna16]

Hi Goregemom,

When I did a gluten challenge (for 4 weeks) after being gluten free for 6 months I became increadably ill  (many other symptoms besides intestinal)...worse than I ever was even before stopping the gluten from the beginning and once I stopped it again I felt really terrible for another week and a half and I am now slowly starting to feel better but its a daily challenge! So I would give it a little more time and see if you start to feel better again...hope this helps answer your question  

[gorgemom]

Thanks for your reply Donna. It does help to hear your experience. I guess I don't understand why I would get so ill with just a little bit of gluten after being off of it for 4 weeks? I obviously was having problems to want to go gluten free in the first place, but they were more chronic issues, things i just dealt with. The stomach problems I have had the past few days after trying gluten again are way out of proportion! Like I said it feels like I have a stomach flu! 

 

As for my kids, there is a lot of history maybe I should explain, my son has dyspraxia and learning disabilities, asthma, reflux, skin rash among other things. My daughter also has dyspraxia, reflux and chronic constipation, skin rash. We are just so tired of all of the testing and trips to the doctor, my son has had egd's, bronchoscopy's, laryngoscopy's, ph probe, impedance probe, ekg's and on and on. They find damage in his lungs and lymphocytes in his esophagus but can't tell me how to help him!!!! My daughter has had an egd and ph probe, again they still can't make the reflux stop. So I started thinking there has to be another way than testing and trying medications! 

So, we decided to look at our diet. Both my sons pulmonologist and gastroenterologist as well as their pediatrician knows we are working on this. 

The fact that my son's asthma got better is HUGE! We tried taking him off of his steroid inhaler about 2 months ago and he got really bad. His asthma is considered severe persistent. 

Also, I homeschool both of my kids, so school diet is not a consideration. I just want my family to be healthy without pumping them full of chemicals. But I don't want to jump on a bandwagon either if that makes sense.

Thanks for listening and the input everyone!

 

Hi Goregemom,

When I did a gluten challenge (for 4 weeks) after being gluten free for 6 months I became increadably ill  (many other symptoms besides intestinal)...worse than I ever was even before stopping the gluten from the beginning and once I stopped it again I felt really terrible for another week and a half and I am now slowly starting to feel better but its a daily challenge! So I would give it a little more time and see if you start to feel better again...hope this helps answer your question

[Donna16]

Thanks for your reply Donna. It does help to hear your experience. I guess I don't understand why I would get so ill with just a little bit of gluten after being off of it for 4 weeks? I obviously was having problems to want to go gluten free in the first place, but they were more chronic issues, things i just dealt with. The stomach problems I have had the past few days after trying gluten again are way out of proportion! Like I said it feels like I have a stomach flu! 

 

As for my kids, there is a lot of history maybe I should explain, my son has dyspraxia and learning disabilities, asthma, reflux, skin rash among other things. My daughter also has dyspraxia, reflux and chronic constipation, skin rash. We are just so tired of all of the testing and trips to the doctor, my son has had egd's, bronchoscopy's, laryngoscopy's, ph probe, impedance probe, ekg's and on and on. They find damage in his lungs and lymphocytes in his esophagus but can't tell me how to help him!!!! My daughter has had an egd and ph probe, again they still can't make the reflux stop. So I started thinking there has to be another way than testing and trying medications! 

So, we decided to look at our diet. Both my sons pulmonologist and gastroenterologist as well as their pediatrician knows we are working on this. 

The fact that my son's asthma got better is HUGE! We tried taking him off of his steroid inhaler about 2 months ago and he got really bad. His asthma is considered severe persistent. 

Also, I homeschool both of my kids, so school diet is not a consideration. I just want my family to be healthy without pumping them full of chemicals. But I don't want to jump on a bandwagon either if that makes sense.

Thanks for listening and the input everyone!

I completely understand your feeling of just wanting to feel healthy!! I will give you some of my history as well...I was diagnosed with migraines at 7yrs, allergies to dust, and I would always catch everything (weak immune system i think). Then at 12 I got chronic juvenille arthritis, they put me on anti-infamatories which landed me in the hospital with internal bleeding. At about 16 I started having major pains under my right rib (countless runs to doctors with no answers, took about 8 yrs for them to do an ultrasound and discover that I have gallstones) At about 18 I started having stomach/intestinal issues... bouts of diarrhea and constipation was seen on several occasions by different gastrointerologists who basically told me I have an anxious stomach and IBS... The last 2 years my digestion problems got really bad, including bad reflux (food stuck in my throat for hrs) and I would start going numb down my whole left side (face to feet). I also have red swelling around all my fingers and toes, and had extremely itchy lower legs, and broke out in hives a few times. Went to the ER on several occasions as this would lead me to a feeling of lost balance, inability to focus, heart palpitations ect... I felt like I was dying! Ive done soooo many tests and all have come back negative ... When I went Gluten/Dairy free last summer plus taking supplements I started to feel better within 2 weeks but then I started having some issues return. This is when I went back to my GP who made me do the gluten challenge. It destroyed me and when I told him how bad the neurological issues were when returning to Gluten he basically said that it had nothing to do with the gluten and wanted to put me on antidepressants! Urggg!!!!! Anyways, so I stuck to the gluten challenge for another few weeks and it was a huge mistake on my part. like I said I am still suffering on a daily basis because of it but I do feel like Im getting slightly better with each day... I started seeing a chiropracor which is helping alot as well!! I really believe that if you stick to this you and your children will begin to feel better!! Have you tried Diary free as well?? I cannot tolerate dairy either!