frustrated!!
#4142 - 03/26/03 08:06 AM
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ok I know this sounds whiny- I am back where I started with my dd GI doctor. They put her on Bentyl, which had serious side effects. and she tried levisin which worked for 6 mos and stopped. Now they want low dose anti-depresants. her reg doc tested her for celiac . she had high IGG and 12IGA and neg foe endo ab. Her Gi says they biopsied last year and she doesn't have it..but when she was on the diet last year it helped. I just don't understand. I think I 'm just taking her off and just doing the diet thing and leave it at that. I 'm tired of doctors and I'm getting no options. I want her to be well , shes 11yo for God's sake.
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Check out the web site celiac.com. If I were you e-mail the person who set up the web site and give him your childs tests results and he will beable to help you. It may take a day or two for him to respond. I found him very resourceful!
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I understand your frustration. It is hard seeing children suffer. It's not fair. Have the Docs given you any other indication other than IBS to put her on anti-depressants???? Is she nervous or anxious or anything or is she fairly calm? Does she have any behaviours that you wonder about? I have an anxiety disorder and have done a lot of reading on indicators in children. Just wondering. It might simply be one more thing to cross off the list if she's calm. Heather's diet is the best I've seen. Not only does it work, but nutritionally balanced. Have you read the section about the dietary guidelines on this website? (click the highlighted words just under the board's title). Hope this helps. Feel free to vent any time you need to - we all do. Maybe we can help, too! 
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Formerly HanSolo. IBS, OCD, Bipolar, PTSD times 3.
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I understand your frustration...I was diagnosed in January with IBS from my doctor and told me I would have to implement some diet changes.
When I asked him what types of diet changes he advised me to cut back on starches and all fruits and vegetables, but I could eat all the meat I want etc. I tried his suggestions and it never made a difference.
Then I ran across Heather's Diet...and I told my doctor about Heather's suggestions, he just told me that he would have to keep experimenting on me and wouldn't really know what worked. I argued with him and told him it was the meat that was causing me a problem and he just didn't get it.
My husband and I talked about it and we both agreed that I would try Heather's diet for one month...if there was no results I would go back to the doctor. I had results in weeks.
So what I am trying to say is that I pretty much follow Heather's diet and the recipes on the boards here and haven't been back to my experimenting doctor in 2 months.
I am not suggesting you do the same, but I just had no more energy to agrument with a "professional". I understand that we all need doctors and should get the proper tests, but my thought was if the diet works - no reason to subject myself to eating meat and causing my body havoc.
I wish you luck, I can't imagine having kids with this syndrome. The pain we endure is tough enough on adults, never mind children!
Lana_Marie
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Lana_Marie
Proud Mommy to Bentley Taylor
Born May 12, 2004 9lbs, 3oz
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Hi - Was your daughter on a gluten-free diet last year? Did she improve from this? If she was give the diagnostic test(s) for celiac after she'd been following a gluten-free diet, the results could have been false-negative. This is because once someone with celiac stops eating gluten, the inflammatory response to gluten ends and the body can heal. At that point blood work and the small bowel biopsy can both come back negative. So your daughter would have to be regularly eating gluten (for I believe 4-6 weeks) and they'd have to run the celiac tests to get firm results here.
If your daughter was better on a gluten-free diet, I'd definitely try that again. If she was just following the IBS diet, but not going gluten-free, you could return to that. As long as she's had the diagnostic tests to rule out inflammatory bowel diseases like Crohn's and ulcerative colitis, and her symptoms don't point to other serious problems that still need to be ruled out (bowel obstructions, Hirschprung's disease, etc.) trying either diet has no risk.
There are other anti-spasmodics she could try as well - Pro-Banthine is actually a children's drug. There's also Donnatol. They are all pretty close, but sometimes their effectiveness and level of side effects varies greatly from one person to another.
If you do go with the anti-depressants, make sure your doctor knows EXACTLY what he's doing. These drugs can be effective for IBS, but they are not typically used with children. They are meant to be used in very small dosages for IBS (a dose so small it would be ineffective for depression). And there are different classes of these drugs, with different side effects. Depending on your daughters's symptoms, certain classes of the drug could make her much worse, not better. So her doc needs to be very familiar with using these drugs for GI problems. And, honestly, I'd still be hesitant, because your daughter is so young, and because these drugs need to be taken every single day. At least the anti-spasmodics are only taken as needed.
Please keep us posted, and give your daughter a hug for me.
Best,
Heather
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Heather is the Administrator of the IBS Message Boards. She is the author of Eating for IBS and The First Year: IBS, and the CEO of Heather's Tummy Care. Join her IBS Newsletter. Meet Heather on Facebook!
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Thank You everyone for answering it has helped to get different opinions. I called the celiac fondation this am and the man that answered the phone said "my GI doc should be very familar with celiac and I should listen to him" But I'll try the celiac.com . and yes ruth was on a gluten free diet for 1 1/2 months before her 1st visit to thr gi doctor who ruled out celiac right away since she didn't have D. which I know isn't always true. Anyway it has helped to have your opinions Thanks
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Oh... yes she is calm thats why I get frustrated when the doc says my only option is elavil. I would prefer at her age that this is a last resort.
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As Heather said, anti-depressants are not recommended for youngsters because they are uncertain of the effects on a developing brain. If she's calm, they are not likely to help. The whole point of anti depressants is to calm you down and relieve symptoms of anxiety, IBS, depression, WHATEVER - yes? Therefore I doubt they'd be very helpful. Take Heather's advice and let us know how it's going. Have you considered talking to another Doc? Sounds like this one only seems to write out prescriptions for pills.
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Formerly HanSolo. IBS, OCD, Bipolar, PTSD times 3.
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My friend is a diagnosed celiac and she had C, no D. You can also be wheat sensitive without being celiac. We are bombarbed by wheat in America, it seems as though everything we eat has wheat in it in some form or another.
Go search the internet in general for wheat allergy and see what you can learn. If the symptoms fit and the conditions stop after using a wheat free diet, you've found your own solution. One thing good about being wheat sensitive is that you don't have to be as diligent as a celiac person that can't eat anything that even has a trace of gluten in it.
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This morning I wasn't going to talk to another doctor again. but I have the option of going to a pediatric celiac GI specialist in Chicago. so I think i'll do that. I just don't like the idea of going doc to doc, test after test to get no releif. she needs to be a kid too.
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