CMG

I had genetic testing done for the same reason as lizard00. My allergist suggested the test after I told her how I react to wheat/gluten. I am DQ2 positive, went to a GI doc with this information, but he won't diagnose base on genetics and symptoms. I did a gluten challenge for a little over a month, and my biopsy was negative. So, I still don't have an official diagnosis, but I do now have my self-diagnosis, bolstered by the genetic result. The GI doc also recommended genetic testing for my children so we will know how closely to monitor them. (One already is gluten free and has responded beautifully - she's the reason I went gluten-free to begin with!)

I've read that it can take up to a year gluten free for significant growth to be apparent. I noticed it after about 18 months - my daughter went from 3rd percentile at 4 1/2 to 20th percentile as we approach her 6th birthday.

I did a gluten challenge - 4 servings a day for a month after a year gluten-lite. My biopsy was negative (no blood work - I don't know why). But the severity of symptoms, along with DQ2 gene, left me with no doubt that I won't eat gluten again.

2 months off gluten is enough to affect your test results. I think you would have to be back on a full gluten diet for a few months to have any faith in the outcome of the tests.

Good luck!

I had chronic diarrhea, urgent trips to the bathroom; bloating, gassy and reflux every time I ate things like pasta and pizza. It all improved within days of going gluten free - which I did initially to help my then-4-year-old adjust to a gluten free diet. I figured if we were in it together it would be easier for her. So that's why I never got tested before going gluten free - I never knew I needed to!

Other symptoms: brain fog, neuropathy, itchy blisters on my scalp and neck, night sweats, mouth sores, dry eyes, joint swelling and pain, to name a few. It all flared up when I did my challenge, and was 90% better within 3 -4 days of getting back on the gluten free diet.

I think I have had a couple of minor glutenings in the month since I have been back on the gluten-free diet - extreme fatigue, brain fog and dizziness seem to come on immediately and are better the next day - but then I wake up with joint pain and swelling (mostly fingers and hips) which lasts a day or two.

I also have discussed my low white blood counts with my mom, who is a nurse. She has researched and said to her they clearly indicate an autoimmune disease.

My daughter dropped from 75th percentile to 3rd in about 18 months (1 1/2 to 3 years); tummy aches, aches and pains, hyperactivity, irritable, pale skin, dark circles under her eyes. We had her tested for celiac at 4 1/2 when she started losing ability to control her BMs. Blood tests were negative and I did not request and endoscopy. I put her on a gluten free diet and the intestinal distress disappeared, all the aches and pains and tummy aches were gone within days. Over the next few weeks her behavior settled down and there was a new spark in her eyes. Every time I let her stray from the diet, all the symptoms reappear. And most significantly, after about a year and a half gluten free she is back up to 20th percentile.

If I were you, I would get the testing done, then I would try gluten free regardless of test results.

I wish you well -

CMG

My girls both loved mini rice cakes. I think MiDel makes gluten free arrowroot teething cookies. As for the messier and more nutritious stuff, my girls both loved mashed or cubed avocado, and one liked cubes of tofu (the other is allergic to soy).

Good luck!

Like you, the greatest benefit for me is that doing the challenge left no doubt in my mind that I cannot have gluten. My husband was asking every day when it would be over so I could get back to my gluten free diet and really wanted me to give up the challenge and skip the biopsy because I was so sick. The rest of my family gets it that I have an issue with gluten, but does not take it nearly as seriously as if I had a positive diagnosis.

Just today, I discussed w/ my GI doc testing my 5 year old daughter, who is mostly gluten free. Basically, we are gluten free at home, and I let her eat any special treats at birthday parties and in her classroom. My doctor seems to think that this could be enough gluten to test a symptomatic child. He specified that we should use Prometheus labs for the most sensitive testing and we should get the genetic test done at the same time. He also implied that if her panel is negative and genetics are positive that we should seriously consider a gluten challenge because of how young she is. His concern was potential developmental issues from vitamin deficiencies in a child so young and having the diagnosis for appropriate follow up care.

Good luck!

Hi all,

I wanted to give an update on my gluten challenge. As you can see from the title, my biopsy was negative.

I had been largely gluten free for close to a year - cheated once in a while, like when my sister baked cookies. I learned in December that I have the DQ2 gene and decided to do a gluten challenge for testing. After about a month of 3 - 4 servings a day of wheat, my GI doctor thought my symptoms were significant enough for an accurate biopsy.

His practice does look for all the various stages of damage, not just complete villous atrophy. We talked about this. He said my villi were perfectly normal. We also talked about the flare up of my symptoms during my gluten challenge and the fact that the symptoms have subsided since going gluten free again. Lucky for me, I have a doctor who acknowledges that it is possible to be severely gluten intolerant without having celiac and doesn't think I'm crazy. So, his position is if you know you feel better gluten free and you're comfortable with the challenges of sticking to the diet, then do it. The fact of the negative biopsy simply means that I don't have to be monitored for complications of celiac.

Now, of course, I'm kicking myself for the things I forgot to ask. Like why did he not run a blood panel when I did the challenge? My only blood panel was done when I was gluten free (in connection with the genetic test, which was recommended by my allergist). Also, what about my low white blood counts that turned up in my most recent physical? My GP said it was consistent with an autoimmune disease.

At the end of the day, I know I'll stay gluten free, but feel frustrated that I went through the pain of the gluten challenge and I really don't have any more information than I did before.

CMG

I'm with everyone else in praise of Disney. I went last year with my 2 children - one gluten-free and dairy-free, the other dairy-free and soy-free. We notified guest relations of the restrictions and it was noted on every reservation we made. Whenever we checked in for a reservation, they immediately brought out a chef or a manager to walk us through the menus. When there was nothing available that would work for my girls, they prepared special meals. Also, most if not all restaurants at Disney cook with soy oil. Every restaurant we went to cleaned grills and pans to start from scratch with olive oil for my soy allergic 2 year old. Disney is the one place I feel we can travel without worry!

Sounds very much like my 5 year old daughter. Her celiac panel was negative a year and a half ago, and we opted not to do the biopsy because she was so young. We kept her on a strictly gluten free diet for about a year and she thrived. I then decided that, since the celiac panel was negative, I would let her "cheat" occasionally - like at birthday parties, so she wouldn't feel so different. We never saw a severe reaction to a single gutening, but a slow, steady decline in behavior and complaints about aches and pains. We're now going back to the strict diet.

The good news is I have talked with her about her behavior and about her complaints - we have talked about it from day one - and I asked her whether she thinks all these symptoms and behaviors were better when she was strictly gluten free. She totally gets it that there's a link. I have talked with her teacher, who is arranging to have some home baked gluten free treats that I provide stored in a freezer at the school so she can get one out whenever there is special food in the classroom. At her last school, her teacher notified me whenever there was a birthday or other celebration so I could send something in with her that day. The school thing is worrisome, but workable if you have a cooperative teacher. Also, her teacher has assured me that so many kids have allergies that she didn't think my daughter would feel different from other kids.

Good luck, and I hope your son feels better soon!

He didn't pick it up before because I had never been to him before. I haven't been to a GI doc in about 15 years. Back then I was told that all my symptoms were stress related. Then I just assumed it was gallbladder related since everyone in my family seems to have their gallbladders removed. I finally started pursuing this last year when my daughter (then 4) got sick and my sister thought my daughter's symptoms were similar to another child she knew with celiac. So, I'm finally on the right track for both myself and my daughter, with all new doctors, because we just moved.

I'll let you know what he has to say about the hernia and esophagitis. My appointment is not until Feb. 25th.

Have you had genetic testing done? I was gluten-free/ gluten-lite for over a year and had symptoms every time I did eat gluten; so, I had genetic testing done and found that I have HLA-DQ2, which puts me at high risk of celiac.

I did decide to do the gluten challenge and endoscopy for a couple of reasons. First, I thought it would help me determine how strict I need to be about cross contamination - strict if it's celiac, less so if it's gluten intolerance. Second, I thought it would cause others (family and future doctors) to take the issue seriously.

I'm still waiting for biopsy results, but the gluten challenge caused so many diverse symptoms that I have no desire to ever eat gluten again (although I still don't know how much I should worry about cross contamination, since I don't seem to get symptoms from small amounts).

The immediate benefit to having had the endoscopy is that the doctor identified that I have a hiatal hernia and reflux esophagitis. We'll discuss what this means when I go in for my biopsy results; but, without the endoscopy I would not have been aware of these issues.

Also, my family finally recognized that I really do get sick from gluten. They are all very supportive now and planning on getting themselves (children included) tested.

Finally, as for duration of the gluten challenge, by the time I had my GI appointment I had been eating 3-4 servings of gluten a day for 3-4 weeks and at least 1 serving a day for about 3 weeks before that. (In "Celiac: The Hidden Epidemic" Dr. Green suggests that 4 servings a day for a month is sufficient for biopsy purposes.) Based on my symptoms, my doctor thought what I had been doing was enough to get a valid biopsy. I had the biopsy the next day and now have been gluten-free for 6 days. I feel so much better!

Sorry for the length of this post, but I hope it helps in thinking through your decision.

Thank you for the information Meline.

I do have a positive HLA test, so I think gluten challenge and testing is the right next step. I have an appointment with a GI doc next week.

Hi. Like many who post in this area, I'm new here.

I have been "gluten-light", as I like to call it, for over a year. I know I feel better when I exclude gluten from my diet and we are gluten free at home. I just don't worry so much about what I eat outside of our house, so once a week or so I'll end up having pizza or pasta.

I recently had a positive celiac gene test - DQ2 heterodimer.

Now, I would like to have testing done to find out whether I actually have celiac. My question is, for how long will I have to include gluten in my diet and how much each day for blood tests and biopsies to be accurate?