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taterhart added a topic in Celiac Disease - Parents of Kids or Babies With Celiac DiseaseNeed Advice About My KidsHey guys! The short version of my story is this: My 3 oldest kids (7.5, 6 and 4) have all dealt with constipation for years. Each of them went through 2 month long bouts with diarrhea as toddlers, but since then it has been constipation. My 2 boys have both had trips to the hospital that turned out to be severe constipation. The answer given to me has always been laxatives. This last time, about 3 weeks ago, our pediatrician told me to give them all Miralax everyday FOREVER. I told her that now the baby is having issues with constipation, and it doesn't make sense to me to have 4 kids having bowel issues, and I want to get to the 'WHY' instead of just addressing the 'what'. She told me that most kids don't eat enough fruits and vegetables and/or drink enough water. If she had bothered to ask me about our habits she would know that my kids only drink water except having 1 cup of milk with supper, and that we eat more fruits and veggies than any other family I know personally. It just doesn't make sense to me.
At the suggestion of a few different people, I looked into gluten, and instantly felt like I had found something. Reading a couple of books, I especially recognized myself. My daughter and I both have autoimmune conditions, so there is that link there for her too.
However, so far I am the only one responding to going gluten free. It has been about 3 weeks for me, 2 weeks for the kids. I have a weird rash on my face that has cleared up. When I ate a piece of bread the rash came back, then cleared up again about 3 days later after no gluten. And I am having reactions to dairy now too. But the kids, so far I can't tell a difference. If gluten is behind their constipation issues, how long do you think it will be before I see a change?
I did the Miralax thing with all of them 2x a day for 5 days to do a clean out b/c my son was so impacted, but Husband and I both agreed that continuing to give it to them everyday for the rest of their lives is just not an option without knowing why.
I was never expecting to see gluten issues in myself; this was all to help my children. And I'm pretty sure that I'm reacting to something else too, maybe soy. Between having all this crazy up and down with myself, and not seeing any results in the kids, I'm feeling very confused, overwhelmed and disheartened.
Does any of this resonate with anyone else?
Should I just stop and find a doctor? Or do I stay the course and wait and see?
I feel like I'm on a freakin roller coaster.
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taterhart added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsNew To Gluten FreeHey everyone. I'm new and have a few questions/want to vent without being told I'm crazy!
Our short story is that all of our kids have had stomach issues forever. Each of them had month long bouts of diarrhea as babies and toddlers, with stools that burned their skin off. Then, as they've gotten older (from about 3 on) the three bigger kids have had chronic constipation. Now my just turned 1 year old is dealing with constipation. This all just sounds too much like coincidence to me, but our pediatrician prescribed Miralax everyday for the rest of their lives! The end! I told her that I wanted to know WHY they were suffering, and she said "not enough water and/or fruits and veggies." Well, that just doesn't fit our MO.
So, last week, at the recommendation of a few friends, I got and read "The Gluten Connection" and am currently reading "Dangerous Grains".
Everything in those books is about ME.
I have vitiligo (autoimmune); mood swings; anxiety, have suffered from 2 pretty serious depressions; am deficient in Vit. D and Bs; have enamel damage on all of my molars; have sleep issues more often than not; suffer indigestion, bloating, and gas (although not severe enough that I thought something was wrong. I thought it was normal to have those issues.); in the last 3 months my menstrual periods have gone crazy (Dr. ran tests, my hormones were normal. She said I may be pre-menopausal. I'm 31!); and have had this weird rash on my face for the last few months. I haven't had time to get to the doctor, as I stay home with 4 kids ages 7.5 to 1 year and my husband travels for work. But the rash started on one side of my face as a pustule. I thought it was a pimple, but it kind of burned and itched. Now it has spread to the other side of my mouth (symmetrical) and a little spot right inside my nostril that itches and hurts. It is a patch of small blisters. Sometimes it is inflamed, sometimes it's not so bad. Does that sound like DH? I've looked up the pictures online, but my blisters have never gotten that big. If I put hydracortisone on the patches, they seem to get smaller, but have never gone away in the months since they arrived.
I started this journey to help my kids, but now I'm thinking it starts with me. I have been gluten free for 6 days now. The first days were BAD. My stomach was churning like butter, and I felt WEIRD, like almost out of body?!?! Then, on day 3, I felt horrible. Is it possible to get glutenized after only 3 days? I toasted gluten-free bread in our toaster and had 2 BLTs, and had the worst bloating/indigestion/stomach cramps I've had in a long time. I felt really great last night and so far today, but I've also not had any dairy, just in case.
Most people around here think I'm crazy, especially since we were initially doing this for our kids. But I don't think I'm crazy. I think I'm lucky as hell to have found this, b/c I think I may actually have celiac. Which is scary.
(PS, my daughter has psoriasis of the fingernails, which is autoimmune, and she has terrible knee aches. My son has canker sores, and some pretty serious behavior/anger issue. All 3 of my older kids complain of stomach aches EVERY DAY. We just assumed they were complaining like kids do. Now I'm convinced we were wrong. Especially since the doctor confirmed that my 4 year old was completely FULL of feces through X-ray. All the way full. And my oldest went to the ER when he was about 4 b/c he had fever, distended/tender belly and pain: constipated to the point of illness. Eating tons of fruits and veggies and tons of water doesn't help. They eat very little junk, only drink water except for milk at one meal, no soda, tons of exercise.)
I am not particularly interested in eating gluten to get tested. The tests are CRAZY expensive, and there are 6 of us. Plus I figure if we go gluten free for a period of time, and then eat it again and get sick, we know everything we need to know. My only reservation about this is that if there aren't more confirmed cases of celiac disease/GS, doctors won't look there. What do you think?
Thank you for listening/reading. This all feels like a dream. This doesn't happen to me and my family! This is something you read about!
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