No Diagnosis - Still :( Please Help

[trying4faith]

Hi all,

This will be kind of long - I'm sorry. But I thought I'd write it all down which might help.

May 2004 - onset of diarrhea, cramping, gas, bloating

Oct 2004 - acute abdominal pain, hospitalized, CT/barium revealed lining of ascending colon inflammed and thickened. Colonoscopy findings negative (other than pus). I/V antibiotics and fluids cleared up "infection from undetermined source" Asocol for one month

Jan 2005 - abdominal pain persists at low level, diarrhea, cramping, gas: can hardly eat, pain afterward is too great.

- Negative U/S for gallstones

- Positive for wheat allergy. Not positive for gliadin and other 2 tests (can't remember name)

- gluten-free for two weeks. migraine for first 7 days

Feb 14 2005 - HIDA CCK failed - emergency gallbladder removal

Feb 24 2005 - LRQ abdominal pain increases, barium/CT - emergency appendectomy.

- new GI - load up on wheat products, endoscopy scheduled for biopsy

Mar 28, 2005 - the appendectomy relieved diarrhea and LRQ pain but gas and moderate upper RQ pain persist

- Endoscopy - elevated leukocytes in small bowel, gastritis = NO DEFINITIVE DIAGNOSIS

I went gluten-free again this past week - migraine since began (on 6th day).

Have been taking Zoloft for 2 years. GI symptoms began one month after dose was increased to 100 mg/day. Dose reduced two months later. Did not consider this as problem until read another person's post - she developed collagenous collitis from Zoloft. I quit taking it two days ago.

Took Celebrex for 3 weeks prior to hospitalization in Oct. Obviously stopped taking it then. Don't know if colitis was induced by infection or medication.

I'm so confused at this point I don't know what to do. The wheat allergy is what got my attention. That, and when my son switched from baby food and Alimentum (pre-digested protein hydrolysate formula - he could not even tolerate breast milk) he stopped gaining weight. He has not gained weight in over a year and looks emaciated. We've seen multiple specialists, no help. He has to take Rx laxative in order to pass stools. Something which worsened with table food. He craves pasta and it's one of the only things he will eat consistently. And no, he won't eat wheat-free pasta His blood work does not reveal anything significant for celiac - does it show up in bloodwork for a 2.5 year old?

I know I sound desperate. I am.

Any help at all is appreciated.

Thank you,

Robin

[Rikki Tikki]

Hi Robin:

Boy, that sounds rough. If you and he feel better going gluten-free I would just keep doing it.

I wish I had some answers for you, it's just such a difficult disease and appears to effect so many different things.

I would just keep both of you off any gluten containing products. If it works that's all that matters.

Try fixing his pasta with a different sauce. I would say give him gluten-free pasta since the other bothers him. He's so young he will probably adjust to eating it and it will save him the damage.

Wish I could be of more help

Sally

[gf4life]

If you can get it, try Tinkyada brand brown rice pasta. Follow the cooking direction exactly and your son probably won't be able to tell the difference. My kids love it and it is almost the exact same texture as wheat pasta and has a really good taste. I've served it to many non-gluten free people and they didn't notice the difference.

Also you should check into Enterolab for testing. I went through all the conventional methods of testing and had no answers, yet I knew I was having a problem with gluten. When I cut wheat out of my diet I felt better, but when I cut out all gluten I felt GREAT! Enterolab offers stool testing for gluten sensitivity (another term for gluten intolerance) and also gene testing for Celiac and gluten intolerance genes. You can find more information at Open Original Shared Link

God bless,

Mariann

[Canadian Karen]

Hi Robin,

When you start your gluten-free diet, do you also cut out caffeine at the same time? That would cause one doozie of a headache......

Also, have you tried going lactose free? Quite often, until the villi have returned, we celiacs are not able to digest lactose, and it causes us MAJOR problems....

I hope other people on this board will help you get to the bottom of this!

Hoping for answers for you soon,

Karen

[trying4faith]

Hi Karen,

I have been lactose free for months now with an exception. I did, after my GB and appendix surgery, eat two huge bowls of ice cream - just because I had to know if the pain from eating fat was resolved (it was). Hurray! But dairy gives me gas so I just don't need the added factor.

There's no way I would cut out caffiene at this point. So many factors. I was going to do them one at a time, but I admit, I stopped the Zoloft AND started the gluten-free diet in the same week.

I am more likely to reintroduce gluten - no way will I risk using Zoloft again.

Thanks for the response.

[Rikki Tikki]

Hi Robin:

What happened when you took Zoloft?

Thanks

Sally

[CarolynM]

Another plug for Tinkyada brand pasta. We had grown accustomed to the others - not bad with sauce - but the texture was noticably different. Just tried Tinkyada - it is wonderful - the texture is great and it holds up to cooking - your son will love it. Good luck.

[Guest nini]

I have to add another plug for Tinkyada pasta. My non gluten-free husband cannot tell the difference and he is very picky. My daughter LOVES all of the Tinkyada pastas.

When I first went gluten-free I had some pretty serious withdrawal symptoms... major headache, severe acid reflux and "jittery-ness" this all passed after about 2 weeks. I had to stay dairy (lactose) free for several months, but then one day I just decided I couldn't go without cheese any longer, and I discovered it didn't bother me anymore.

I know it sounds mean, but your son will eventually eat gluten-free pasta willingly if you find one that he likes, and don't give in and give him wheat pasta just because he won't eat the other kind. Eventually he will eat it. My daughter was 3 when she went gluten-free, and it did take time to get her to accept gluten-free mac and cheese and gluten-free spaghetti. I had to find ones she liked. Tinkyada pasta is the best. It cooks easily and doesn't get mushy.

[skbird]

Also a fan of Tinkyada pasta but also really like the Quinoa pastas I've found in many stores now, too. It's quinoa and corn.

Stephanie

[trying4faith]

DELICIOUS!!!!!!!!!!!!!!!!!

Thank you so much for the suggestion. I tried it and bought six bags of the Tinkyada. The oldest eats it (some of it) the little one throws it on the floor still. That's okay, I think they will adjust eventually and hopefully come to love it just as much as the wheat stuff.