Please Help, Don't Know Where To Turn

[sscrazmom]

This is my first post. I have a 4 yr old boy who was somewhat diagnosised last yr. After many invasive tests and many doctors telling me they could find nothing wrong with him. At 1 yr he was diagnosised with failure to thrive, tested for cystic fibrosis, underwent 2 colonoscopies and endoscopies, and endless blood tests to no avail. I was told he might be allergic to milk and we removed all milk products and there was no change. I finally stepped out of the box and went to a non-traditional allergist and he took one look at the blood tests performed when he was 1 1/2 and told me he had a wheat/gluten allergy but probably not celiacs because they did not find it in previous tests. We removed him from all product that contained wheat/gluten which was a confusing and enormous task to tell a three year old that he could no longer eat all the foods he loved, and replace then with strange tasting and textured food. He is a trooper though, he endured what no child should feeling ill all the time, then being poked and prodded for almost 2 yrs of his life.

There was a change almost immediately, his dark circle under his eyes, his horrible and chronic cough, diarehia, distended belly and hives went away. He gain a minimal amount of weight even though he is still very tiny. A 4 yr old that wears 24 month clothing. Now almost a yr later from intial diagnosis all of the above symptoms have returned with a vengence, though nothing dietary has changed. I went to the doctors yesterday and was told that she has no clue what to do with him, and put him on antibotics (this is his third antibotic in a month and a half). I called his allegerist and he is no longer practicing,I don't know what to do, I'm so worried about my baby. Has anyone else experienced this sort of thing? Does anyone know where I should turn. We are on our fourth doctor and none of them seem to know anything.

Any help would be appreciated and thank you all for letting me vent. No one around here understands. Sue

[KaitiUSA]

Wow looks like your family has been through so much..I hope it gets better.

If the celiac is not is far stages yet there may not have been any damage to detect in his intestines. Has he been tested for a full celiac panel before?

If he was getting better and now after a year getting worse again is there something that is possibly getting in his diet?

Gluten hides under so much.

https://www.celiac.com/st_main.html?p_catid=12

Here is a link to some lists for foods we can and cant have and things that can be questionable. I mean you need to even check his toothpaste, and so forth. Is there possibility of cross contamination at your house? Or anywhere he has been has he had anything that could have gluten? like a daycare(if he goes to one) friends houses, etc...

Could there possibly be another food he is sensitive too?

I understand your concern I was sick for 2 years before I got a diagnosis and my mom did not know what to do and I was told I was fine over and over and they never did a celiac panel on me...until I switched doctors a few times and he suspected celiac.

I would find a doctor for your son who is well versed in celiac and could help you out with that.

I would also recommend an enterolab Open Original Shared Link

If you go to their FAQ page it tells you he does not have to get back on gluten for the test unless he has been off for more then 2 years. They test for alot of things including a celiac gene test and other sensitivites to foods, malabsorption in the intestines and so forth. This may be of great help

Also York labs offers tests for food allergies, etc. so that may be another option.

This is a great place to come for support or for any questions you need answered....

I hope your son feels better soon and if you need any help just let me know and I would be happy to help

[jmj0803]

Sue-

Do you have a Children's Hospital around you? It took along time for my daughter to be diagnosed (4 years). Try and find a good GI doctor that specializes in pediatric GI(preferably also Celiac). celiac disease can go hand in hand with other Auto Immune disorders, so your son could have an underlying disorder along with celiac disease. My daughter was diagnosed Hypothyroid(this also effects height growth) first then celiac disease. Also, I had to take out all dairy in her diet, the lactose intolerance would give her the same symptoms as celiac disease (ie loose stool, bloating,dark cicles,cramping and so on). The doctors say until her intestines heal she cannot tolerate dairy.

I hope this helps, keep your chin up! I've learned that you are the only advocate your child has, keep pushing until they find the underlying cause.

Jessica

[stomica]

Sorry you've had such a long few years with all the medical testing! My daughter, who's now 3 1/2 years old, has undergone similar things. They initially dx her with a milk allergy. The elimination diet did nothing. In fact, it made her worse. (Though now we suspect a wheat allergy or gluten sensitivity...taking her milk away caused her to eat more wheat...making her worse.) Anyway, she underwent a colonoscopy which resulted in a diagnosis of inflammatory bowel disease. They think it's ulcerative colitis, but crohn's can't be ruled out at this time. I know that Crohn's disease can be difficult to diagnosis. It often presents itself as gi symptoms as well as poor growth. Scopes may not be able to reach the terminal ileum, which is often where you'll find Crohn's disease. I don't mean to scare you, but it's just something to keep in mind with all the tests. If you've kept your son's diet gluten free, and he's experiencing symptoms with a vengeance...you might need to look elsewhere for answers. I'd ask the doc for a stool occult test as well as blood work (sed rate/crp, cbc, albumin, hemoglobin). I'd also ask they run the celiac panel again if you're son is eating gluten presently.

I hope you get some answers soon! Good luck!

Sue

[sscrazmom]

Thank you all so much.... It helps knowing there are others out there that understand.

Sue

[scaredparent]

Hi my son and your story sounds about the same. My son diahrea started to get better and then it got worse. We were told he has a glutten allergy but other allergies to that is causing the same problems. We finally put my son on Singular and Zertec and a kept him on a glutten free diet. They call it esosinophlic gastrointeritis (sp). With in 2 days he was back to feeling better. You can either call me or email me and I can visit more about what problems we had. My email address is dsaabbb2005@yahoo.com or 785-546-2522. We are from Kansas good luck.

[Guest ajlauer]

First off, any doctor that puts somebody (particularly a child) on antibiotics - because they DON'T KNOW WHAT TO DO WITH HIM, should lose their license!

If/When they do blood work again, I'd check for food allergies. There could be something that has recently developed. The allergist told us that Melanie's allergy antibody level is so high, her allergies will just get worse as time goes on - not better.

Also, could he be allergic to the antibiotic that he's taking??

Or another thought... with it being his 3rd in a month and a half, he is probably now lacking the healthy bacteria in his intestines. I would almost think a probiotic would be better right now. Of course, I'm not a doctor (although I did take some medical classes and work in a medical field for 5 years) and don't intend to replace the advice of a doctor. But a 2nd opinion, I think, would be a good idea in this situation. Remember: if there's no bacterial infection, the antibiotic will do NOTHING to IMPROVE his situation!!!