Vomiting With Weight Gain?

[jcgirl]

Hi all, I haven't been on recently because my son has been getting progressivly worse sense January. He vomits more than he doesn't. After a follow up endoscopy and another biopsy for celiac with full blood panel the answer was still negative to celiac. GI said he believes he may have cyclic vomiting syndrome with abdominal migraine. I have been doing alot of research and he just doesn't fit the bill. He is progressivly getting worse and not responding to medications. Brandon has vomited approximatly 51 days so far this year. Vomiting episodes alway accompanied by ab pain. He has had ab x-rays at ER and they said he has to poop and has alot of gas (give me a break), ab CT scan did show slight enlargment of a gland (still not sure what one), brain MRI report said normal, AB/Renal ultrasound said mild fatty deposits in liver. He has gained weight through all of this. Face is fat and mid body fat, sounds to me like it could be some form of Cushing's. His thyroid tests normal except for elevated total T3. Oh, he is also retaining fluid. We are being referred to Cleveland Clinic for metobolic testing.

I am at my wits end. Can't seem to put this puzzle together and I feel like time is waisting away waiting for Cleveland. Has anyone else had any experience like this? Also, I have lost faith in local doctors, they seem to have tunnel vision now, especially the ER doctors. The kid was vomiting blood, pediatrician told us to go to ER, the wanna be ER doctor said it was not his area of experteas and suggusted alternative medicine and not to bring him back unless he vomits a cup of blood or more. Needless to say I told pediatrician who in turn has filed an official complaint. Our new pediatrician is the only local doctor I trust, he is looking at every possible senario. He also ran celiac blood panel again, still negative. Skin prick tests negative as well.

So anyway the official dx's that we have thus far is major acid reflux, 4 esophigus ulcers now cleared up, pyloric ulcer cleared up, definate lactose intolorance.

Any suggestions or insight would be a big help. Afterall, it was the internet and this site that helped me figure out that I have celiac. As a side note, through all the stress of my son's illness, I cheated, had some beer and broke out with DH. Stupid me.

Differential diagnosis to cyclic vomiting are many, including partial intestinal obstruction and ureter obstruction. How would one go about getting an independant analysis of films?

Sorry for the long post and I thank you all in advance for your caring and understanding like always.

Laurie

[cornbread]

Laurie, is the vomiting related to what he eats, ie: is it on days he has consumed gluten (wheat, etc.)? Very often the celiac blood tests are negative even when people have celiac - the catch is that it's an intestinal disorder, so the antibodies are in the intestinal tract and don't always reach the blood. The most sensitive test is a stool test. You can order one at Open Original Shared Link for $99. You don't need a doctor's referal, you can just go to the site, order the kit, they send it to you, you send your sample back in and you have results within 3 weeks (via email if you like).

I gain weight if I consume gluten - it's definitely a myth that all celiacs are skinny.

If you have celiac it is VERY likely your son does too. I would follow this path and exhaust it before you consider anything else, it just makes too much sense.

Good luck and please let us know what you find out.

[AngelRT]

My Husband has been suffering from horrible frequent Cyclic Vomiting for 7.5 years now! This past weekend we FINALLY found out that he is INDEED positive for Celiac Disease! Since Wheat was a HUGE thing in our house....it was practically killing him! His pancreas began shutting down, his intestines has a severe bacterial infection and he has colitis...among other things like malnutrition. It can be very very frustrating! Just dont give up on your search! Doctors will continue to push cyclic vomiting patients to the side. They look at it as THE ILLNESS or DISEASE! Its NOT!!! Its a severe symptom OF A DISEASE! I am sorry you are having to deal with this but if I were you....I would go Gluten free for a year and see if it helps!

[eatmeat4good]

That is very scary. Are you feeding your child gluten free in spite of the negative Celiac tests? Sorry I wasn't clear on that. It sounds life threatening to me. I'd probably drive to the Cleveland Clinic and present to the ER there and tell them you cannot possibly wait for your appointment...you tried...but the vomiting is killing him and you are afraid he might die from it before he is diagnosed.

I don't think I'm being overreactive. You have been dealing with this for a long time and he is getting worse. If Cleveland Clinic is where you need to be and you have an emergency situation, which I think you do...then go! They may admit him right there and help you finally. What a horrible situation. You have my empathy.

I feel strongly about this not just because it is a child, but because, I too, like the previous poster, was vomiting for 7 years. Given IV's to hydrate and Promethazine to stop the vomiting and it was an awful waste of life to be sent home to vomit, take pills and not have an answer for that long.

I wasn't successful, but maybe you will be. Keep advocating for your son and do what you think is right.