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Mom2J112903

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by Mom2J112903

  1. Mom2J112903
    Just rememeber that a swallow study is only a snapshot and may or may not show what you have seen at home. My son was coughing/gagging on solid foods as well as liquids. Only liquids proved to be an aspiration risk on swallow study though. His scopes show damage from GERD but that does not cause the problems with swallowing that he has. We have no idea...
  2. Mom2J112903
    If she is eating more colored foods, that can be the culprit. My son's BM's are almost always green but he is on an elemental formula and those are known to change the color of stool.
  3. Mom2J112903
    I ALWAYS sent EVERYTHING my son would need if there would be any type of food OR drink needed for the day. Hands were washed before touching his foods and I had no worries about him being served something he shouldn't injest.
  4. Mom2J112903
    He needs a swallow study to see if he has developed Dysphagia. That is the LEAST invasive test that can be done and THEN the endoscope. A GOOD GI will do the LEAST invasive testing first before proceeding to a surgery-IF at ALL possible. Answers can be found in something as a swallow study, so why risk a surgery if it is not needed?
  5. Mom2J112903
    I would just honestly ask for a refferal to a GI. Peds are for the common childhood things, not a GI disorder that will need followed by a GI.
  6. Mom2J112903
    A wheat allergy the child can outgrow but the treatment is the same as it would be if Celiac's came back positive. A stritcly gluten free diet is ordered for both. We started with low IgA levels and a positive allergy testing to wheat. Then found damaged celia on scope, not enough to properly dx Celiac however. Based on clinical symptoms and the previous...
  7. Mom2J112903
    Is he getting a lot of carbs any longer? Or is his diet less carbs now? I wonder if he is going thru a yeast die-off.
  8. Mom2J112903
    I guess you could say that thanks to our experinces with the little man we are "outside the box" thinkers. We started at birth with GI problems but he has been seen by many other specialities over the years because of different things.
  9. Mom2J112903
    Has she ever had *any* type of allergy testing? I would get the delayed allergens pulled as well as immediate. A good allergist will know what to draw and how to write up the lab slip. Some delayed allergies can and do cause GI problems.
  10. Mom2J112903
    Have they done other GI testing? Have they thought about gut rest meaning an elemental formula whether by mouth or by tube? My son has a dysfunctional GI system and the elemental diet is the ONLY thing helping him. If they have not done a colonoscopy, that is where I would start.
  11. Mom2J112903
    My personal feelings are-if any symptom has gone on long enough to cause a change in daily life style, a specialist needs brought in. A pediatrician is for simple childhood things, not something like this. It can still be Celiac but the testing will not be accurate as the IgA is low. There are MANY other GI disorders it could be as well, so a GI is a good...
  12. Mom2J112903
    My son doesn't experince the rectal prolapse but we have SEVERE colon issues. Has the GI ever done a colonoscopy? I am sure they have but it they haven't, I would insist on one.
  13. Mom2J112903
    Yes, stomach acid does allll sorts of lovely things to clothing And in our case burns nostrils when you smell it I would be looking at the other ingrediants in the pasta. It has been too long for me to remember the ingrediants in it, although that was our FAVORITE brand of pasta to buy and eat. Veggies here are BAD, BAD, BAD for my son. That...
  14. Mom2J112903
    I have done that numerous times. Also been "christned" with 12hr old formula too. We have had numerous EGDs, two colonoscopies, two UGIs, one SBFT, one lower GI, one barrium enema and a swallow study. Also been under for tonsils, adenoids (different ages) and oral surgery. So yeah, combine all of my son's GI problems with anesthesia and I...
  15. Mom2J112903
    Has he ever had any other GI testing done? Celiac was just the "tip of the iceburg" for my son.
  16. Mom2J112903
    When my son was able to eat he had to be gluten, dairy, soy, nut, lemon and flax free. Even on tube feeds and the occassional frozen yogurt treat he needs dairy free. He is one child that will never be able to have dairy again.
  17. Mom2J112903
    VERY typical! My 8yr old is down at 8p and is snoozing by 830p most nights. He goes down at 8p because he starts his feeds at that time. Even before the g-tube, 8p was bedtime because otherwise he is a bear with a sore bumm! Before the tube he was up by 630am and just not a happy camper. Now that he is feeling better, we get at least 7am out of him, but...
  18. Mom2J112903
    Have they done any other GI testing? Could be a number of different things but the least invasive and the one that would give immediate answers would be an UGI w/SBFT which is an Upper GI w/ Small Bowel Follow Thru. Basically they watch him drink som barrium and then take x-rays at certain intervals until the barrium goes all the way thru the small bowel...
  19. Mom2J112903
    Thank you for saying what I couldn't say nicely. All I could say was "once a Celiac, always a Celiac" It is NEVER going away and why someone would think differently is beyond me as well.
  20. Mom2J112903
    Sorry I did not read all of the replies but "once a Celiac, always a Celiac" there is no going off gluten and then years later being able to eat it again without symptoms.
  21. Mom2J112903
    My son did this and we found out his *entire* GI system is malfunctioning. He has Dysphagia, GERD, DGE (Delayed Gastric Emptying) and Dysmotility of his colon which has led to chronic constipation needless to say megacolon. This all in addition to the Celiac. If the pain is bothering her to the point it is causing problems with daily life, call and get...
  22. Mom2J112903
    Miralax is the safest and least invasive. We have had to do hospital clean outs, which are NO fun. We did one cap full of Miralax in 8ounces of CLEAR liquid with NO solid food during waking hours until we saw "Mt Dew" colored stool. No more than 48hrs though and for my son, that was never enough.
  23. Mom2J112903
    Celiac, Megacolon most likely due to an IBD but thanks to the size and shape the colon is in we can't get the proper biopsies taken. He is treated as an IBS case though. We have Dysphagia, GERD, Delayed Gastric Emptying, Celiac, and Megacolon not to mention chronic constipation. So his entire GI system just has awesome :insert sarcasm: motility. What...
  24. Mom2J112903
    My son, even on an elemental diet thru a g-tube, has to have 3 doses a DAY to keep things moving freely. His colon is MASSIVELY enlarged and we really have NO idea why or HOW it got as large as it did. We are on the path of "do whatever it takes to save the colon" right now.
  25. Mom2J112903
    You will be able to heal the damaged Celia but upon injestion of gluten, the symptoms will return.
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