hikermom4

Thanks ravenwoodglass, that is good info. I too am trying to convince others to test. I am also trying to establish the family history for my son's doctors, so they will test him. He is 6 and already went through way too many tests at age 2 (apparently not for celiac), all inconclusive. My sister's blood work was negative, but her endo showed extensive damage; and still they did not diagnose celiac. She is off gluten and feeling great. After this challenge I will go back to being gluten free. If I get too sick I will stop. Before I went gluten-free, I was dizzy and faint, besides all the GI stuff; if I even approach that, it is over. I would just take my son gluten free without any diagnosis, but I am concerned about making sure the school system will respect his diet needs, and I think that here they do not unless a doctor signs off on it. I also don't want him to go through a life of being told it's all in his head, like I did. So here goes! Thanks for your support.

Hi all,

I keep reading about the possibility of false negative tests after one has been on the gluten-free diet and then does the testing. My GI doc recommended adding gluten back in for 6 weeks then doing the blood work and endo. Has anyone had this work? I am willing to do it to get a proper diagnosis, because I am sick of being told that my symptoms are just caused by stress or eating too many fresh veggies. (And those comments are from doctors!) But I reacted after eating one half of a breaded piece of chicken (my first gluten in 6 weeks). Is it worth it?

thanks for taking the time to read this!

Wow, how did you get your money back? I would love to do the same, since it wasn't cheap, and I feel like a sucker for having spent $$ on this and other supplements, which I really can't afford, because I was desperate to feel better.

Yes, I took it. I tested positive for wheat year ago by way of a traditional skin test. Recently I decided to eliminate wheat completely (which my doctors had never advised me to do...go figure) because I had been feeling fatigued for a long time. After doing so, I felt great for a few weeks, then began to feel dramatically worse and hade new GI symptoms. I went to an allergist, only to be told they only do inhaled allergens. My chiropractor recommended the above test, which I paid out of pocket for because I was desperate. Several items showed a positive reaction. As a result, I am left with a very restricted diet. Some of the items which showed a positive reaction do indeed bother me (burning mouth, etc). However, two allergists I have spoken with since then have said that it is not considered a reliable test, that it only shows that your immune system is working on foods you have recently eaten. Many of the foods which turned up positive on my test are foods I eat every week. A few are foods I never eat (ie lobster...yuk).

I understand the name of the test is banned on this website because they spammed it. I would love to know what other people's experiences have been with this. I am going to the GI doc tomorrow to discuss the GI symptoms. Have been gluten free 6 weeks as a result of the test, and do feel much better in the stomach.

Good luck with your process!

Hi all,

I am seeking a doctor who will assess us for food intolerances/celiac. My PCP diagnosed me with acid reflux and is content with that. Son has been to GI specialists at a children's hospital; treated with Pdeiasure to gain weight from age 2-4 then discharged, saying they didn't know what was wrong. I had asked for allergy testing and they looked at me as if I'm a hypochondriac. Son is pale, distended belly, often has diarhhea, history of projectile vomiting several times per day (this part now resolved) just made it to the normal growth level on chart. I have an appt with GI specialist in 2 weeks and am hoping he will assess me but I've been gluten free for 3 weeks and don't want to go back to it! I have had GI problems all my life, and was always told I had a "nervous stomach." My sister was treated for IBS for years until she began bleeding and vomiting at work; now she is diagnosed with severe gluten intolerance (in another state, or I'd go to her doc)! There is an extensive family history, which the allergist who saw my son this week showed no interest in. Frustrating!!!

Anyway, does anyone know of doctors in this area who treat celiac and are willing to assess food intolerances?

Thanks!

Two weeks off of gluten is iffy as to whether the results will be accurate. I have read on here many times that people have been gluten free for months and then did a 3 month return to eating gluten so they could be properly tested. When they post their results that they were miserable all three months and STILL tested negative on the endoscopy and biopsy. It is extremely variable as to whether you will test positive even if you have been eating gluten the whole time. There is a high false negative rate. They usually post that they are going to go gluten free anyway in spite of the negative test result. If you are concerned about other things as well of course you should still go through with the testing. Some people's antibodies clear very quickly and others don't.

Thanks for your reply!

Hello!

I am new to this forum. I have been having GI symptoms for a while, long story as usual. I have an appt to see the GI specialist in 2 weeks; have been gluten-free 3 weeks. If he orders an endo, do you think it will be a false neg? How long does it take for gluten to clear the system? I am 51 and have been wheat free 5 months, but completely gluten-free only 3 wks. I am also concerned about checking for other problems.

Thanks for your help!

Kaiasmom, another possibility to consider is PANDAS, which is Pediatric Autoimmune Neurological Disorder After Strep. This is a rather newly identified disorder which begins in childhood, after strep infection (sometimes throat and sometimes elsewhere). The immune system is affected in a way that brings about neurological symptoms; separation anxiety and ocd are part of it. Ask your treatment providers if they are familiar with it; some are, some aren't, like with celiac. Her symptoms couild be naturally arising from the stress of knowing sher has to avoid allergens, but this is just another item to rule out. There are some nice PANDAS information websites, and there is a good article on the NIMH website which I believe is www.nimh.gov.

I am convinced the latest issues are cross contamination from my kitchen. I know the gluten-free lunchmeat cut on the store slicer gave me gluten for a week 2 weeks ago and I am still recovering. I haven't done a lot with my kitchen, but today is the day. I did rearrange the pantry, but today it shall be cleaned. The fridge and the cooking utensil drawers will be cleaned out and we are going shopping. My daughter had a stomach and headache last night and I know she has been gluten-free meal wise since last Wed. after the stupid GI appointment. It must be cc. Any guidance would be appreciated.

I don't know if it is possible to get cc from the dishwasher, but this week I noticed residue in our glasses after the wash cycle was over. My husband cleaned out the drain, which had a plastic straw cover and an onion skin in it. This was keeping food residue from being rinsed down the drain. Now our dishes are clean and I don't worry about getting cc from there...although it may be excessive worry, I don't know. Good luck finding the source of your problem!

Thanks to you all for sharing your experiences. I have been to several doctors over the past few years about the cough, fatigue, and GI symptoms. They would usually hand me a bag of acid inhibitors, allergy meds and nasal spray, which worked in the short run but didn't really cure anything. In January I had a bout of constipation which made me feel like my body had shut down completely. Going gluten free is helping immensely. Twenty years ago I was diagnosed with wheat intolerance via the elimination diet, but no one ever suggested cutting out other glutens. Now I have done the (Company Name Removed - They Spammed This Forum and are Banned) test and it showed many food intolerances...I spoke to an allergist, who said it isn't a reliable test, but I get the "cough" after eating many of the foods which showed up positive. So right now I am waiting to see a GI specialist in 2 weeks. I am hoping he will be modern and open minded. In the meantime, I'm not sure what to eat..a nutritionist was advising me, but it sn't covered by my insurance and I was running up quite a bill. So now I eat chicken for breakfast, soup for snacks, etc!

Sorry this post is so scattered...it's a reflection of my inner thoughts. It's nice to know I am not alone! People have been commenting on my cough and I couldn't wait to get rid of it, and now it's mostly gone.