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Need Help - New Possible Dx - Son Sick!

DebbieJny

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DebbieJny Newbie
DebbieJny
Posted

I'm so glad I found this forum. I hope someone can help me as I am about to bust at the seams.

We are new to upstate/western NY (10 mos.) and are now on our 3rd pediatric practice (not solely for reasons related to celiac disease). My story is this in a nutshell:

My 5 year old son got a stomach virus about 2 months ago. He had the vomitting, diarrhea, dry heaves, etc. It wasn't pretty but he got over it. Or so we thought. Since then he had intermittent vomitting, irregular stools (well, actually - let's just say more irregular than usual), a "greenish" cast to his lovely face and dark circles around his eyes. He seemed just blah, complained of a tummy ach all the time and didn't interact in his usual jovial way with the things and people he loves. We took him to 1 doc who told us to stay off the milk and come back in a week. (By the way, she first thought he was malingering in order to get out of going to school!) That obviously didn't feel right to me so I called around until I found a pediatric office who agreed to test him for things like appendicitis, etc. Well, the next ped office did extensive testing (blood and an abdominal x-ray). He had hardened stool in his digestive tract and a week later we got a positive anti-gliadin test result. Now, the only place they will refer us to is a hospital in my area but the wait time for an appointment is 2 months.

Oh, and the doc told me not to change his diet so that the additional test results needed will come back accurate.

I am between a real rock and a hard place here. They want me to keep giving my son a substance that is potentially harmful to him for 2 more months and/or until they get to us on the wait list.

I am in the midst of doing my own research on finding someone else in my area but am terrified of going to another quack who won't treat him properly.

Can anyone offer any helpful words of advice or make a recommendation for a celiac specialist in NY?

Thank you!!!

Debbie

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penguin Community Regular
penguin
Posted

Welcome to the board! Sorry your son is sick, and that you can't find a good dr. to help. Did they run the full celiac panel or just one type of antibody?

Where in Upstate NY are you? I used to have a great pediatrician (for myself :) ) in Syracuse. Her name is Dr. Cummings and she's in East Syracuse.

St. Joeseph's in Syracuse is a great health system and has fantastic dr's all around. I don't think I needed a gastro at the time, but my other experiences were great.

DebbieJny Newbie
DebbieJny
Posted
  • Author

Hi,

thanks for the reply. they did 3 or 4 and only the anti-gliadin came back positive. I do not have any information on the degree of the problem yet. I assume that comes with a biopsy?

jerseyangel Proficient
jerseyangel
Posted

Hi Debbie--welcome in! :) I'm sorry to hear of your son's difficulties. If you want a firm diagnosis, he will need to keep eating gluten until he can be tested. Since he has had a positive result with the blood testing, they will probably do a endoscopy/biopsy of the small intestine. If you will be interviewing other doctors, ask if they treat any Celiac patients. There are doctors out there who have an outdated idea of what Celiac is, and how a person presents with it. Another way to go is to take the positive blood result, and put him on a gluten-free diet yourself. A positive response to the gluten-free diet is a valid diagnostic tool. Just know that taking him off gluten will definately skew any result of testing from then on. In the end, it's up to you. I'm sure that soon some of the parents of kids here will weigh in on their experiences. Best of luck!

floridanative Community Regular
floridanative
Posted

I would say maybe try and get into Columbia Univ. in NCY if at all possible. Their Celiac research program is probably one of the top five in the US. But then the wait for that might be even longer, I don't know. I hope you get the answers you are looking for soon. But like jerseyangel stated - if you really want the biopsy, you have to keep your child on gluten until then. Good luck to you. If gluten is the culprit, you'll be amazed how quickly your son recovers once off it!

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

I'm so sorry to hear what you and your little one are going through. There are many people here who are far more knowledgeable about this than I am, so, guys, feel free to jump in and correct me!

I'm wondering if it might be at least some help to reduce your son's gluten intake, and even to experiement to see if some kinds affect him worse than others. I'm wondering this because my 7-year-old's eczema and occasional stomach-aches (sometimes once a week, sometimes several times a week and we could never figure out a connection) TOTALLY disappeared when I went from gluten-in-every-meal to gluten-lite (gluten at lunch only). This change was brought about by my bloodwork (because I was too lazy to cook separately for me). I had no idea that any of my kids might have gluten issues. :blink:

The question for the forum experts is, would reducing the gluten intake screw up future test results? Might it at least partially ease her son's symptoms? And are some types of gluten easier on the system than others? I noticed that I didn't react to Chinese dumplings, but I can't for thelife of me figure out why. And I remember reading on this board that somebody did not react to real sourdough bread.

Anyway, good luck, and keep us posted! I hope your little guy feels better.

DebbieJny Newbie
DebbieJny
Posted
  • Author

Thank you for your replies. It helps me to know that there is support out there. I have felt pretty unsupported by the medical community in my area and none of my family has ever dealt with this...that I know of, that is.

What worries me so much is how my son looks. He just looks sickly all of a sudden with the dark circles despite plenty of sleep and even an afternoon nap most days. His skin color is terrible ranging from greenish to grayish, as compared to the inside of his arm. Can this be a symptom of celiac disease in terms of the malnutrition? He is also so much more tired and lethargic than he has ever been. Do any of you parents give your children nutritional supplements and/or extra vitamins?

I think that celiac will be hard for a child his age, or anyone who loves pizza for that matter, but I think I can deal with it if I just knew for sure that it wasn't something more serious. It is such a helpless feeling to be told that no one can help him for 2 months! It just seem unethical to me when my boy is constantly sick and is declining in school. Tomorrow morning I am calling every place that I can that I think is reputable until I can get an appointment asap. Does anyone know of anyplace on Long Island or in NYC besides Columbia that would be good to check out?

If the Dx is positive, how frequently would we have to go back to the same doc and is it then possible to transfer to a local doc?

Your replies have helped me and I thank you very much.

Debbie

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Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Wow, Debbie, it does sound scary. Do you have a pediatrician that you like? Would they be able to get your son seen by a specialist sooner? Sometimes, if it's the pediatrician making the appointment (and making it sound urgent), an appointment magically opens up the next day or so.

The dark circles and tiredness would worry me, too. I have heard (from several sources) that dark circles are a red flag for food allergies. The tiredness--that could have so many different causes: thyroid (but I assume they tested for that in his bloodwork), heart, allergies, etc. I think it's criminal to make you wait 2 months for an appointment. I can't imagine that your pediatrician would feed gluten to HIS child for 2 months under the same ircumstances, nor would he wait that long for an appointment!

Another option might be to call your health insurance and ask to speak to a nurse or doctor (NOT a phone answerer!); I'm sure they don't want to pay whatever it'll cost if there's something that's seriously wrong because of a delay in care.

Does your health insurance REQUIRE referrals? I'm just wondering, because Blue Cross-affiliated health insurances (even the HMO's) in Western PA seem to have done away with referrals (they couldn't keep up with the paperwork, I bet).

Good luck, and let us know, okay?

TCA Contributor
TCA
Posted

Just a thought - if you can't get in with anyone for 2 mos, why not try a totally gluten free diet for a couple weeks. If he doesn't improve, you could always put him back on it for the tests for the reamaining 6 weeks. My son got gradually better on the diet, with the D stopping after 3 weeks. I could tell it was helping some after a week or so, though. If it is celiac or gluten intolerance, though, only a 100%gluten free diet will work. If you need help with food ideas, just PM me. I have a list of foods for my 3 year old I'd be glad to share if it would be helpful. Good luck and I hope he feels better soon.

Welcome to the board!

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