OCD And Celiac

[Deana Huneke]

My daughter is fairly new to celiac disease she was diagnosed 3 days before Christmas, but is no stranger to food allergies/intolerances. She is anaphalytic to dairy and bee stings, and has severe reactions to soy, beef, cherries, latex adhesives, and of course wheat and gluten.

The doctors believe that Kaia's nissen fundoplication and g-tube placement 2 1/2 years ago was the stressor that set off her celiacs and she struggled with it for 2/1/2 years before being diagnosed. She just turned 5.

Up until we had to remove all gluten from her diet (and we did it cold turkey and immediately)we had no problems with psychological issues and her allergies. Shejust asked if she could or couldn't have something and went about her business, but now.....anytime she thinks ANY allergen has touched her she goes balistic, she asks you if you can imaginarily spray away the allergens and then she rubs her hands, or toy or whatever she believes touched something in her hair sevral times--this she does almost subconsciously. She is ripping parts of her hair out. She was referred to a psychologist who we have met with 3 times for OCD issues but I am not taking her back to him--he told us at her last appt. that he gets bad reactions to posion ivy but he is not going tokeep that from enjoying camping--if he touches poison ivy he is going to tell himslef oh well thats life and deal with it. I can't get it through his head, that she is a very oral child--and yes she still uses a pacifier although limited but with 23 surgeries in the last 4 years I can't bear to take one of the few comforts from her--she only uses it at home in the car and during surgery. Her other comfort is a bear that is dressed like a bunny and she rubs his ears on her eyes nose and mouth. He wants her to tell the allergens you don't scare me and move on...what he doesn't get is they should scare her--a milk based lotion will cause her to need her epi pen any other allergen has her out of school for 3 to 7 days.

Does anyone know how I should handle her OCD issues and whattype of psychologist I need to look for for her. We live about 75 miles form Cincinnati and that is where she was seeing this quack, but I need to find someone new.

Thanks

[iamsarar]

Wow, so sorry your little one is going through that. I am a early childhood teacher and the thing I always recommend to my parents is to call the children's hospital which it 2 hours away from our small town. They deal with children 24/7. I would look for the nearest children's hospital and start there. Good luck to you.

[Juliebove]

My daughter is 12 now. Doesn't have OCD (not so as I can tell anyway) and is very careful about her allergens. People who do not have allergies do not understand and sometimes even when they do, they do not understand.

Just the other day I was told by someone with gluten issues (not sure if it is an allergy or celiac) that if my daughter or I got desperate enough we would get a job at McDonalds. I told her, no, we would not. That would be just plain stupid to get a job working around our allergens.

I once sought counseling for some medical issues I was going through. My main problem was that I was just seeing incompetent Drs. who were unable to diagnose me with what was wrong. This was very frustrating to me and dragging me down.

I found that while the counselor agreed with me, she really was no help to me at all and in fact she told me she couldn't help me. Gah!

Luckily we moved to another state where I found good Drs., the correct diagnosis and proper treatment. I hope your daughter can get help with another counselor.

[T.H.]

I have a friend who has a number of anaphylactic allergies that she developed as a small child.

What your little one is going through sounds pretty similar - she said that she got very OCD about her food, because it's just so out of control, and very scary, for a little one to go through this.

My daughter has been having trouble reacting, too, and so I was asking her what helped her. She said that the best help had been a psychologist/psychiatrist that specializes in people/children with chronic pain or chronic illnesses/conditions. They are used to dealing with the stress that comes from something you can't control, and from something that IS serious and is not just going to go away - unlike, pardon my language, morons like the doc you had to put up with who assume that everyone with mental difficulties doesn't have REAL problems so they don't really need to stress about them.

One other thing that was very useful, that her psychologist specialized in, was bio-feedback. If you can find a psychologist who also knows about bio-feedback with children - they do it differently with little ones than with older folks. My friend said that this helped her immensely. She's in her late twenties now and she still uses some of her bio-feedback exercises when she's stressing about food and reacting.

Hope that might help you find someone to help your little one, too!

[Deana Huneke]

I have a friend who has a number of anaphylactic allergies that she developed as a small child.

What your little one is going through sounds pretty similar - she said that she got very OCD about her food, because it's just so out of control, and very scary, for a little one to go through this.

My daughter has been having trouble reacting, too, and so I was asking her what helped her. She said that the best help had been a psychologist/psychiatrist that specializes in people/children with chronic pain or chronic illnesses/conditions. They are used to dealing with the stress that comes from something you can't control, and from something that IS serious and is not just going to go away - unlike, pardon my language, morons like the doc you had to put up with who assume that everyone with mental difficulties doesn't have REAL problems so they don't really need to stress about them.

One other thing that was very useful, that her psychologist specialized in, was bio-feedback. If you can find a psychologist who also knows about bio-feedback with children - they do it differently with little ones than with older folks. My friend said that this helped her immensely. She's in her late twenties now and she still uses some of her bio-feedback exercises when she's stressing about food and reacting.

Hope that might help you find someone to help your little one, too!

Thank you, I called the Dr's office and spoke with the intake director about finding someone else to work with my daughter and it seems now all the dr is doing is calling to see why I don't want him working with her! The head of the department was suppose to call me and discuss new options, but I think the only thing she did was go tot the psychologist and say "fix this". I need to get my dander back up again to call again to try and get the help my daughter needs.

[hikermom4]

Kaiasmom, another possibility to consider is PANDAS, which is Pediatric Autoimmune Neurological Disorder After Strep. This is a rather newly identified disorder which begins in childhood, after strep infection (sometimes throat and sometimes elsewhere). The immune system is affected in a way that brings about neurological symptoms; separation anxiety and ocd are part of it. Ask your treatment providers if they are familiar with it; some are, some aren't, like with celiac. Her symptoms couild be naturally arising from the stress of knowing sher has to avoid allergens, but this is just another item to rule out. There are some nice PANDAS information websites, and there is a good article on the NIMH website which I believe is www.nimh.gov.