Ttg Improved But Symptoms Not

[adevers]

Hi. This is my first post, but I

[Jai]

Wow. Sorry about your struggles. I have no answers really, just sympathy. I went gluten free in June, and initially improved, but have had abdominal pain resurface and am in the process of trying to figure out what's going on. There doesn't have to be only one thing wrong! What about other food intolerances? Soy? Corn? Eggs? What is she eating, when she eats? I can sympathize with the fear of eating! Been there, actually I'm still there. Let me just say that I love rice! Nothing bad ever happens when I eat rice

I wish you and your family strength and luck!

[BabsV]

Wow, I'm so sorry for your daughter. I am so not an expert but I can share my story. One of my main symptoms of Celiac Disease was intense abdominal pain -- prior to my Celiac diagnosis I had two doctors agree it was a 'functional' pain issue and they put me on anti-anxiety medicines (one made me horribly ill as it interacted with another medicine I was on and one relaxed me but did nothing for the pain!) They wanted to put me on tri-cyclic antidepressants but I have a problem with serious side effects to a lot of medicines and the doctors were really worried that TCAs would cause all sorts of problems for me. During this process I did a lot of research and using TCAs is one way to work with functional pain issues...along with Cognitive Behavior Therapy. So it is a valid approach for functional pain issues with certain health conditions (e.g. GERD)...BUT...it did nothing for my Celiac pain. Not sure if Zoloft is a TCA (they are an older class of antidepressents); I was told TCAs are supposed to work better with pain than some of the newer classes of antidepressants, e.g. SSRIs.

At this point I'm not even 3 months into the gluten-free diet and while my pain issues have decreased a bit I still have pain every day, usually after eating. I started keeping a food diary and have eliminated some items that seemed to be making the pain worse (raw fruits & veg, beans, corn, fruit juices, etc.) I'm sticking to a very plain diet of chicken/turkey/fish, rice and potatoes, cooked fruits & veg. No dairy, no sugar, no gluten-free replacement foods. I'm just trying to add some nuts as of today. This approach seems to be helping somewhat...I figure I just have to continue healing and give it more time. I've ordered some gluten-free probiotics and will start those as soon as they come in.

She just might need more time for the pain issues to resolve.

[pricklypear1971]

First, I'm sorry to hear your daughter is going through this.

Second, are you sure she isn't getting glutened? I know you're being careful but it sounds like she is very sensitive, so extra precautions may be needed. Read on the supersensitive forums for ideas.

Have you checked with Pfizer to ensure Zoloft is still gluten free? It looks like it is from web searches but formations change. Are there any other meds that might contain gluten?

I would try elimination diets based on the major allergen groups: milk, soy, egg, nuts. I'm sure I'm forgetting something...

And finally, yes it can take a long time to heal.

Have you considered acupuncture for the pain? I know she's little but perhaps this would work. I've seen many posts about how acupuncture works well for Celiac nerve issues.

Good luck!

[adevers]

Thanks so much for your reply. She's actually on an NG feeding tube right now. However, the elemental formula being fed to her does contain soy. We're looking to potentially change the formula to remove soy as well. Thanks again for your input. I wish you the best in solving your struggles as well. It's great to have a community that can relate!

[adevers]

Thanks a lot for your reply. I think your situation sounds very similar to my daughter's. I'm encouraged that you're seeing some improvement after 3 months of eating gluten-free despite the 'functional pain' diagnosis. Happy to hear that for you. My gut feel tells me the same thing you you suggested....that she just needs more time. She's actually on an NG tube exclusively right now, so other than soy (which is in her elemental formula), her food intake should be ok. I wish you the very best in your recovery. Thanks again for your input!

[adevers]

Thanks a lot for your reply. Good question about her meds. We have looked into many of her meds, but we do need to do a thorough check to ensure she's not getting gluten that way. Will also look further into acupuncture. Interesting idea. Thanks again for your thoughts. I really appreciate it!

[Bubba's Mom]

I'd be suspicious of the soy. Once I went gluten-free I found I was reacting to even very small amounts like soy lethicin. If I ingest it I get bad pain in my belly, GERD, too.

I've cut that from my diet and the pain went away.

Your Dr.s DX might be correct, but in a lot of cases they don't have answers as to why something happens. They seem to prefer to prescribe a med to counteract the symptom rather than searching for the true cause?

Good luck to you both!

[adevers]

We've seriously considered removing the soy. I guess between our doctor suggesting that it wasn't an issue and the fact that her diet is already so restricted, we'd decided not to remove soy to this point. However, my gut tells me that it's worth a try. Anyone know how long is a fair trial for soy elimination? Thanks so much for your input. I really appreciate it.