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Old 07-26-2010, 09:13 AM   #71
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Re: Gluten Free Mamas, UNITE!

Ok ... I'm coming out of lurkdom ... I read a lot on this forum .. but rarely post ..

I have a ds (now 6) who has had all kinds of issues from the beginning of his little life.
He had lots of what I know now are digestive issues as a baby, and respiratory problems as well (bad case of RSV at 4mths despite being totally breastfed). He was also a "failure to thrive" baby. Without knowing about all the possible dietary issues, I tried him on a diet that was about 1/2 yogurt mixed with either V-8, or once in awhile fruit juices, and just a few jars of baby food. He did MUCH better on this (knowing what I do now it makes sense!) That was when he was about 16-18mths old. He also had some major developmental delays (didn't crawl til about 17mth, or walk til 24mths, and had to have therapy to do so!). As he got older we noticed more and more his tummy looked bloated often. He also has had constipation issues since he was tiny. Around 2 or 3 he started complaining about joint pain! He was tested for a few things, even took him to the genetics dept. of our Children's Hospital and they could not figure him out.

I finally gave up, and just ignored his differences for the most part.

Well, fast forward to this year ... my mother has been doing a lot of research on some issues she has, and found that she is gluten sensitive (self-diagnosed) so the thought crossed my radar so to speak, however it didn't really hit me until my sister came across a list of celiac symptoms while doing some research on other things. She thought it fit my son so sent it to me ... and reading that list was VERY eye opening to me! I hadn't known before that just how many other things can be caused (despite trying to eat "healthy" for several years now) by improper digestion!!

I pulled gluten out of his diet slowly over the next couple weeks and was amazed at the change in him even just reducing the gluten. He has now been nearly 100% gluten free for a couple weeks and is doing much better. His tummy looks much more normal, hes not complained about joint pain but once or twice (was daily), and tummy ache complaints all but disappeared as well.

I have enjoyed reading this thread, and learning how to bake/cook without gluten.

Right now the rest the house has still been eating foods with gluten, however I've begun to wonder if it might be better for us all to just go GF with ds. So am slowly getting it all out of the house and aiming for GF whole house by the end of the summer at the latest.



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Old 07-27-2010, 10:13 PM   #72
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Re: Gluten Free Mamas, UNITE!

So interesting to read everyone else's experiences.

Here's my story...perhaps a bit unorganized, but it's the first time I have tried to get it all down.

I have been on a GF diet for the past 2 weeks, with the exception of a major slip-up* last Friday (which I am still paying for). So far, the GF life has not been that difficult. And, I really don’t have the desire to cheat (except when I see the yummy cookies from McAlister’s that show up in the break room at lunch time). I think this is because of how I now know it will make me feel badly if I do eat the forbidden foods.

My story is that I have had frequent, severe headaches for as long as I can remember. They have gotten worse in the last few years (even went to see a neurologist and was put on suppressive therapy). Also, I have had chronic back and neck pain since age 16. Nothing has helped for those complaints (chiropractic care, osteopathic manipulation, NSAIDs, opioids, muscle relaxers, physical therapy, massage, rolfing, and some sort of mystic ill-defined “body-work”). I had given up on these symptoms ever relenting. Additionally, I have had a sensitive GI tract since middle school. This got a lot worse during a summer in Costa Rica. When I came back, I thought I had some sort of parasite, so I went to a GI doctor. My tests came back negative, so I just lived with the problem, and did my best to ignore it. Fast forward to fall of 2008. After seeing a patient in the hospital who had ignored diarrhea for many years and turned out to have a serious health problem, I decided to seek medical care for my GI issues. I started with my PCP; she did a blood test for celiac (oh yeah, I forgot to mention that I previously had a nasty, treatment resistant rash on my hands). It was negative and I was referred to a new GI doctor. In my consultation, he discussed with me how he felt celiac was getting more press than he thought it deserved. He quoted me some crazy number of how rare it is….something along the lines of there were only a handful of people in Tulsa (where I live) who actually have it. He then suggested that I have a colonoscopy and give stool samples (certainly seems like they always want to do a colonoscopy….). Basically, nothing was found, so I was diagnosed with IBS. As an aside, I think IBS is sort of a cop-out diagnosis. Seems a little shady to me. Sort of like, they are saying, “All of the tests I have done have come back normal, but I don’t want to admit I don’t know what is wrong with you, so you have IBS.” So, I took the nice little folder full of info about IBS and I really tried to follow the advice. I ate a lot of fiber, even took fiber supplements. None of the directives helped.

My mom frequently offered up suggestions to help with my headaches. Most of the time, I just tried to placate her and act receptive to her suggestions. She kept reminding me about my cousins who are sensitive to gluten and had vast improvement in their health when adhering to a special diet. My mind kept going back to my GI doctor who had the diatribe about the rarity of celiac. Suffice it to say, I was skeptical. One day a few weeks ago, I decided that I had nothing to lose by going gluten free. I started noticing improvements in my headaches, neck pain, and diarrhea within 3 days. I couldn’t believe it. Hmmm….maybe doctors aren’t omniscient, after all (sort of a tongue-in-cheek comment, as I am a family medicine doctor).

*About my slip-up. It was completely intentional. I was totally stressed and taking care of 4 children and on-call for work (with a very sick patient who needed to be transferred to a larger hospital). I had bought a pizza for the kids and it smelled so good, and I was trying to eat between fielding calls and feeding the baby, and I caved. I knew I would pay. I was willing to trade a few days of diarrhea for instant gratification. Now going back, I would have made myself a bowl of GF cereal. The resulting headache has been bad. Here’s hoping tomorrow is better.

That's my story, and I'm sticking to it.
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