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Could This Be Celiac?


littlemann1

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littlemann1 Newbie

Hi everyone. I am new to the forum and joined to hopefully get answers. Ok so my son just turned one a month ago and soon after he started to get diarrhea. It progressed from just loose to yellow mucous several times a day. It has been over 2 wks now. He has been to the er 3 times, his pcp and a gi specialist. They all are throwing different things out there but are not fully listening to me. There are too many personal opinions on this. I started to worry greatly after a week when his diarrhea got worse instead of better. Of couse the first diagnose was a visus! Which is doctors answers for everything. I knew this was not it simply because no other symptoms, fever, fatigue,nothing.  Second time in ER different hospital next day I made them do a stool sample. It came back with c. diff,  but they said my pedi would have to retest because false pos. in infants.  My pedi repeated the stool test. Still waiting. I have gotten things like... Too much juice, too much milk,    Neither the case. My issue is he recently started eating more table foods, but he only likes to eat dry food like crackers. I noticed he would have loose stool after eating alot of it especially grahm crackers. I told them this but they act like it is impossible for toddler to be celiac?  They told me to just keep his diet the same. He is starting to be weak from all the b.movements. He has no other symptoms but the bm's and tummy aches. I also had to convince doctors to test for parasites they act like there is no such thing!  It is just strange that it started after eating crackers. Crackers, and goldfish are the only new foods in his diet.  I stopped wheat abount 5 days ago if it is this how long for symptoms to dissapate? (Sorry for long post)  TIA

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tommysmommy Newbie

Hi, follow your instincts and push your doctors! This time last year my 1 1/2yr old developed ongoing diarrhea and vomiting. Everything he ate wemt right through him. Doctors insisted it was a virus. This went on for almost 2 montbs.. He went from a healthy 30lb baby to a sickly 20lb baby, failing to thrive. We were made regular ER visits, spent 3days in a prominent childrens hospital where they toeruees gom with tests & procedures, them discharged him with dx of gastroenteritis & virus. Of course that wasn't it & he kept getting sicker. He was starving, would eat & eat but everything went right threw him. Eventually I started researching celiac & called Ped GI office (who expected me to wait a month for a follow up appointment, and they didn't understand that i was sure he wouldn't survive that long). They told me it was not celiac, that celiac doe s not present with sudden onset as his did. I realized then and there that I had tp try everything I could think of for my son because the doctors clearly had no idea & seemed to habe given up. I put him on a gluten-free diet and within 12homes he had his first normal bowel movement in 6wks. He stood up that day ans wanted to try a play. I was able to get him an appointment at the peds gi 1 week later (thanks to a cancellation) and he was walking and significantly improved. Turns out another doctor had ordered the celiac blood panel weeks earlier & no one noticed the positive results. 11months later, he is happy & healthy. Google Celiac Crisis. It's considered rare but I suspect otherwise, too many with celiac have gone through b

hell trying to get a diagnosis, and they wonder why 90% of the 3million celiacs in US are undiagnosed. Good Luck!

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littlemann1 Newbie

Thank you so much for the response. Sorry for spelling errors. So his test results for stool sample came back negative. Go Figure! It has been 11 days off wheat and finally a almost normal poop. The last week he has had almost white colored bm's which were freightning. The GI doctor took more blood for infections, bacteria and such, wants me to get and ultra sound and HIDA scan. We are refusing the HIDA scan. She also insists we keep giving him wheat because he needs it in his diet and that is not what is causing his issues.  I disagree. When I originally wrote my first post here it had been 5 days, off wheat. After 2 1/2 wks diarrhea and 6 days off wheat it started to subside. Then his bowels movements went to pale color gray white, and the color of butter. They thought it was his liver!   I am thinking it just took 11 days off wheat for his little body to heal. Still no one else is sick, and all the test they have ran are so far negative.  Since the doctors won't test for celiac I plan on keeping him off wheat for a while then tring it again when he can handle it. If he gets symptoms, I will have to demand a test. That is if I want proof on paper, otherwise we will be fine gluten free.    I read alot about Celiac being hereditary. I was wondering if perhaps it skip a gen. or not? My mother has always had lots of stomach issues and kidney stones. She has Graves disease, (hyperactive thyroid) and this causes her kidney stones, her kidney stones are composed of oxilates, and when recently trying to make a connection I found that their is a connection between thyroid disease and celiac. Also, wheat cantains oxilates. I am thinking she might have celiac, and this is what caused all her stomach isssues her whole life and the thyroid problem and her never ending kidney stones. Doctors cant seem to figure out why she continues to get no matter what treatment. I told her to discuss this with her new doc, who she says is great, she is skeptical, but says she will.

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tommysmommy Newbie

One smart momma...i sent you a private message , pls try to get docs to do a celiac panel with todays blood work. It's really important. Celiac is tricky but thankfully its the only disease that you have complete control of, no meds, just food! Would be happy to help you...been there! I also asked friends in the Awesome celiac community to give you advice, those who live the life unstand it way more than most doctors.

btw, whereabout do u live? Maybe someone can recommend a good doctor!

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    • trents
      What kind of stool test was done? Can you be more specific? 
    • mishyj
      Perhaps I should also have said that in addition to showing a very high response to gluten, her stool study showed that she had extreme reactions to everything achievement on it long course of microbials to treat that.
    • mishyj
      My daughter has celiac disease and has had for a long time. She fell loses strictly gluten-free diet and recently got rid of all cutting boards in any gluten in her house at all. She just had a stool test and it came back showing of gigantic response to gluten in her diet. What could be going on since she doesn't eat any gluten and is very careful about any kind of hidden glue? Help!
    • cristiana
      I think sometimes the pain described here can be a result of a sort of 'perfect storm' of contributing factors.  Recently I had an appalling bout of lower back pain, lower burning gut pain and what felt like cramps.  I then started to think about what could have caused it and I realised it was several things that had set it off: I'd been carrying heavy luggage (back strain); I had been sitting down in a car for too long and wearing a tight belt (I have pudendal nerve issues and sacroiliac issues and this exacerbates the pain), and I had bloating and burning pain in my colon caused by eating too much soy, latte and caffeine, I guess putting further pressure in the lower abdomen.  I had this same pain prior to my diagnosis and a couple of years post-diagnosis, I'd quite forgotten how unpleasant it was. 
    • cristiana
      HI @Kirbyqueen That's great news your insurance will be kicking in soon.  Sorry to see that you have been dealing with this for six months now, but I do hope you have managed to find some relief with some of the suggestions in the meantime. Perhaps come back and let us know what the doctor says. Cristiana
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