Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Need Help - New Possible Dx - Son Sick!

DebbieJny

Recommended Posts

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,791
    • Most Online (within 30 mins)
      7,748
    klholt
    Newest Member
    klholt
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Toothpaste question.

      By Scott Adams · Posted

      There is no scientific evidence to suggest that hydrated silica or its relative, silicon dioxide, triggers a celiac-specific immune response or causes intestinal damage in individuals with the condition. The concern you likely encountered online is a common misconception. Here’s the key distinction: the protein in gluten (gliadin) is what causes the autoimmune reaction in celiac disease. Hydrated silica and silicon dioxide are minerals, chemically inert compounds of silicon and oxygen, and are completely unrelated to gluten proteins. They are widely used as abrasives in toothpaste and anti-caking agents in food powders because they are stable and non-reactive. While any individual can have a unique sensitivity to any substance, there is no mechanism by which these silica compounds would mimic gluten or exacerbate celiac disease. Your diligence in using a certified gluten-free toothpaste is the correct and most important step, as it eliminates the risk of cross-contamination with wheat-derived ingredients like starch. Based on current scientific understanding, the hydrated silica in your toothpaste is not an issue for your celiac management.
    • Scott Adams
      Probiotics

      By Scott Adams · Posted

      There is no single "best" probiotic brand universally recommended for celiac disease. The goal of a probiotic in this context is to help support the gut microbiome, which can be disrupted by the damage caused by gluten exposure. The most important factor is not the brand name, but ensuring the product is certified gluten-free, as some probiotics use wheat-derived starches or are produced in facilities that handle gluten, posing a cross-contamination risk. Furthermore, the specific strains of bacteria can matter; some research suggests strains like Lactobacillus and Bifidobacterium may be beneficial, but individual responses vary greatly. Because the supplement industry is not tightly regulated, choosing a reputable brand that undergoes third-party testing for purity and potency is key. 
    • Scott Adams
      Celiac attack confusion and anxiety

      By Scott Adams · Posted

      What you are describing, while terrifying and severe, is an experience that others in the celiac community have reported during a powerful reaction. The systemic inflammation triggered by gluten exposure in someone with celiac disease can absolutely extend far beyond the digestive tract, creating a cascade of symptoms that feel like your entire body is in revolt. The severe pain, neuropathy, muscle and jaw tension, and intense anxiety and confusion are all potential manifestations of this body-wide inflammatory and autoimmune response. It's a well-documented phenomenon that a celiac attack can provoke a significant neurological and psychological component, including "brain fog," disorientation, and panic-level anxiety. While your first step should always be to meticulously re-check all foods, medications, and even cross-contamination sources, it's also possible that a previously safe product has changed its formula or that you encountered a hidden source. 
    • Scott Adams
      Manitol and mri

      By Scott Adams · Posted

      The substance you're likely thinking of is "mannitol," which is a sugar alcohol, and it is indeed used as a sweetener in some "sugar-free" products. However, for an MRI, the drink is almost certainly "Mannite," which is a brand name for a laxative preparation used to cleanse the bowel before the scan. Its primary purpose is not to sweeten but to create a clear image by distending the bowel and stimulating a bowel movement. While the names sound similar, the function and formulation are very different from a small-quantity sweetener. That said, your concern is valid and should be addressed with your healthcare team. The most important step you can take is to call the MRI department or your referring doctor directly. Explain your specific reaction to sweeteners in detail—mentioning the throat and ear sensations is crucial as it could indicate a more significant sensitivity. They can confirm the exact drink they use, check its full ingredient list for you, and determine if an alternative prep is available or if pre-medication is recommended to ensure your safety and comfort during the procedure.
    • Scott Adams
      KATZ CINNAMON DONUTS

      By Scott Adams · Posted

      I'm so sorry to hear you're feeling so unwell, and I hope you recover quickly. While your personal experience of getting sick is absolutely valid, there are a few key inaccuracies in the information you've shared that are important to clarify for anyone else reading. The central misunderstanding is about oats and gliadin. Oats do not contain gliadin; gliadin is a specific protein found exclusively in wheat. The protein in oats is called avenin, which is similar in structure but is a completely different compound. For the vast majority of people with celiac disease or gluten sensitivity, pure, uncontaminated oats are safe. The reason "gluten-free" oats are necessary is because regular oats are frequently cross-contaminated with wheat, barley, or rye during growing and processing. Certified gluten-free oats are tested to ensure they are free from this cross-contamination. It's possible you may have a separate and less common sensitivity to avenin in oats themselves, or the illness could have been caused by another ingredient or even an unrelated virus. Given your expertise and severe reaction, it would be a good idea to discuss this with a doctor to pinpoint the exact cause. This article, and the comments below it, may be helpful:    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.