Really Interesting Results From Avoiding Gluten

[Smarts]

Sorry this is so long!!

I just really wanted to touch base to let you guys know how my gluten free diet is going (after my doc found villous atrophy last month from a capsule endoscopy). I see him again on Tuesday and will find out the results of the genetic blood test , but meanwhile chose to go off gluten. In doing so I found I react to corn (even the slightest traces as in maize starch etc). My daughters 9 & 7 also decided to try gluten free (9 yr old has had reflux like me since birth and was recently diagnosed as having IBS because of frequent nausea and stomach cramps/ 7 yr old can't eat strawberries (causes rash), has huge tantrums several times a day, is withdrawn at school, has a permanent runny nose). 9 yr old came out in massive rash 2 weeks ago, doc said it was caused by an unidentified allergen. Found empty bag of gluten containing chips in her bag following day (she misread "contains gluten" as "gluten free"). She chose to eat challah (Jewish bread) last Friday night. All weekend she complained of severe stomach cramps and feeling sick.

When I spoke to a couple of friends they were very unsupportive and said I was over reacting to something I don't have results to yet and that I should get my kids tested before I play with their diet. I felt so depressed, so on Monday I searched through my cupboards and found a small bag of gluten containing (but not corn containing) crackers and ate them. My mouth felt tingly (but was that in my mind)? Within half an hour I felt like I could have punched anyone who came near me. My reflux returned with a vengeance and I had to sleep sitting up in bed. My skin felt itchy. Tues I felt really sensitive and depressed, everything was getting to me - had a band of pain around my head. Wednesday I felt better, but I looked pregnant my tummy was so bloated, also my nasal drip was back. i couldn't do my jeans up and I was ravenously hungry. Wednesday night 2 big mouth ulcers popped up in my mouth (haven't had them in months). Thurs I felt like I was coming down with something, my muscles ached and my throat and head were sore. Friday I was feeling better, just a bit gassy.

As for 7 yr old. Well she was becoming an angel. We even had a day or two with no tantrums, and the ones she had were manageable. She would be listening to me through them!! I picked her up from school on Thursday - and it began before we'd even got to the car. She was hitting her sister, yelling, screaming - there were no real triggers either. She even attacked the dog. I had never seen her this bad. I asked her if she had eaten anything other than what was in her lunchbox. She yelled at me "only the flavoured seaweed in J's lunchbox - we swapped". That flavoured seaweed contains soy!! Her dad nearly throttled her that night she was so bad. Even yesterday morning before school she was hell. Then I picked up an angel in the afternoon and she has been perfect ever since.

Now 7 yr old is a terrible sleeper - has been since she was a year old. She can go to bed really late and still will wake up by 6am. Over the past 2 weeks I noticed both kids sleeping better. This morning (Sat) was one of those rare days we had no plans. Hubby and I rolled out of bed at 9 to a silent house. We left the kids to their own devices. Neither child stirred until 11am!!! Both children look happy and refreshed (if a little shocked) by their big sleep. 9 yr old says that off the gluten, she no longer has tummy cramps and stitches!!!

Have to be honest, I am still a little anxious that the doctor will tell me that I don't have the genes for Celiacs

[GlutenFreeManna]

First of all, welcome to the self-diagnosed club! Even if the doctor tells you do not have the most common gene, that does not mean you don't have celiac or gluten intolerance. Your medical test results are none of your friends' business. They don't have to know every detail. You can tell them you have it without divulging the results of the tests. Some on here have been diagnosed by doctors based on diet response alone. So don't let your friends tell you that you are being ridiculous. True friends will support your choice to eat gluten free and not question whether this is all in your head. It's NOT all in your head, BTW. These are real reactions you are observing. For your children, you should push to get a diagnosis if possible. It will make it easier with school and make other people that have to feed them take the diet more seriously. But for yourself, as an adult, you don't need a doctor to tell you that gluten does all kinds of crazy things to your body.

[Skylark]

What do you mean you don't have test results? You have villous atrophy and feel better off gluten. That's celiac disease in a nutshell. Even if you don't have the genes it doesn't matter, as there are some people with celiac who don't have DQ2 or DQ8.

I agree that you should get the girls tested. Having a formal diagnosis might make things easier in school, and easier once they are older and more inclined to test things like gluten-free diets.

[ravenwoodglass]

The villious atrophy is the gold standard for celiac diagnosis, you are diagnosed no matter what the test results say. As for the little ones, I do wish you had their blood tested before going gluten free. They both clearly have have had positive results with the diet and slip ups have shown the issues returning. Talk to your ped and let the ped know that you have been diagnosed. The ped may want them to do a gluten challenge for the blood testing but the chance of a false negative with kids is pretty high even on a full gluten diet. If you do have them tested I would get them back on the diet no matter what the results.

[Smarts]

The villious atrophy is the gold standard for celiac diagnosis, you are diagnosed no matter what the test results say. As for the little ones, I do wish you had their blood tested before going gluten free. They both clearly have have had positive results with the diet and slip ups have shown the issues returning. Talk to your ped and let the ped know that you have been diagnosed. The ped may want them to do a gluten challenge for the blood testing but the chance of a false negative with kids is pretty high even on a full gluten diet. If you do have them tested I would get them back on the diet no matter what the results.

Hi - when my doc showed me the villious atrophy on the screen last month I had barely even considered gluten intolerance (crazy looking back on it considering how much ill health I have had in my life). I was pretty uninformed, and was overwhelmed by information from well wishers about the benefits of a gluten free diet for children. I discussed it with my girls and they were so excited to give it a go. I'm well aware now, that if I choose to get them tested, I will probably have to make them eat gluten for a while. I'm not sure how that will go down. It has been my intention that I would wait for this upcoming appointment (Tuesday) to see if I have a recognised gene and then decide my next move. My 9 yr old was under the care of a paediatrician from 6 months to 3 years because of her stomach issues - it took me those first 6 months of her life to get anyone to believe this wasn't ordinary baby chucking. My poor girl had a barium meal when she was a year old which confirmed chronic reflux. In the past 3 or 4 years I have been to that many doctors about her spells of nausea, vomiting, stomach aches and dizziness - no one has been that interested and told me she will either get over it, or most recently that she has IBS. Neither child has seen a ped since they were bubs.

It's a little upsetting, there is one girl in her class who is confirmed (? so we are led to believe) as having Celiacs. My daughter came back from a party tonight. This other girl is actually being quite nasty to her telling her that there is no reason why she can't eat gluten. My daughter said "well I have lots of vomiting and tummy aches, but now that has gone away since I stopped eating gluten, and when I do eat it I get a bad rash and feel sick and my tummy hurts". The girl looked at her and said "that's not celiacs". I really do agree that my girls must get tested.

[ravenwoodglass]

Something you may want to look into is Enterolab testing. They do not diagnose celiac but they can tell you if the girls are making antibodies to gluten. I think they can find the stool antibodies up to a year after someone goes gluten free. A few doctors accept their test results but not all because they have not been peer reviewed.

Since you mentioned the rash issue you need to know that there is a skin condition that some of us have called DH. A diagnosis of DH is a diagnosis of celiac. If you can get her into a celiac savvy dermatologist while she has an active rash she might be able to get a firm doctor defined diagnosis that way.

The child your girl encountered sounds like a little brat. It must have upset your child quite a bit and I am sorry this happened to her. Unfortunately there are bullies and even as adults some of us just have to try not to let them get to us too much. Easier said than done though. Give your little one an extra hug from me.

[Skylark]

I would make a terrible parent. I would have told her to tell a "white lie" that she has celiac too.

[Smarts]

I would make a terrible parent. I would have told her to tell a "white lie" that she has celiac too.

Believe me - I am so tempted!! My 7 yr old is going to a party this afternoon. Just bumped into the girls Mum who told me "don't worry, we have a gluten free chocolate cake for your daughter and another girl from the class". Seems my girl had told the party girl she was gluten-free, who told her Mum!!! I didn't even know there was another child in her year who was gluten intolerant. Feeling a bit better as a result. But stomach isn't - I was a bit slack with checking my food yesterday (we ate out lunch and dinner), ordered gluten free when I could, but have no idea if my food contained traces of corn or gluten .