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

What Questions Should I Be Asking?

momto3

Recommended Posts

momto3 Newbie
momto3
Posted

Long story, but I will try to keep as short as I can.

My youngest is currently 20 months old. About 7 months ago, we noticed that he was breaking out in a bright red rash on his legs, back and belly. Pediatrician diagnosed atopic dermatitis and prescribed steroid creams. Those helped, but he was still breaking out on back, belly and face. I started keeping a food diary, and I made a connection between wheat products and the rash/hives. Poor kid would scratch until he bled!

I put him on a gluten-free diet. Pediatrician did allergy panel (all negative) and Celiac (negative but had been gluten-free for at least 2 weeks). We noticed on gluten-free diet that he had a positive change in bowel habits, was gaining weight after slipping at 15 mo well check and was less irritable (even extended family noted that).

Saw an allergist this week, skin test only showed tree nut allergy (whole other issue). Did another blood panel for allergies and Celiac. Allergist said why not do it even though he's been gluten-free for 6 months.

All this time, we've been thinking wheat allergy. The pediatrician didn't think it was Celiac, but the allergist said with the symptoms and negative allergy results, maybe.

We go back in a month to talk to the allergist about the blood tests and game plan. I'm thinking and hoping to go to a gastroenterologist to get some kind of actual diagnosis one way or another, although I dread putting him on wheat just for testing.

Sooooooo....... What kinds of questions should I be asking right now? I thought Celiac was off the table, now it's back on. Does this sound familiar to anyone? What should I be noting that will help out?

Any pointers appreciated!

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

Celiac.com Sponsor (A8-M):


mommy2krj Explorer
mommy2krj
Posted

False negatives for Celiac run really high in children so young.

I would ask them to

 

A) Give you a copy of the tests they've already run. Doctors...for whatever insane reason...don't always (or rarely I've found) run the full Celiac panel. If they've only run two tests...they haven't run them all. Someone much more familiar with all of this than I am will probably come along and give you the full list of the tests...there are 4 of them.

 

B)  Ask the allergist if, when you put your child back on wheat (because yes, you'll have to and for quite a while too) if he breaks out in the rash again if they will do a biopsy of the skin around the rash (the clear skin...from what I understand that is where you have to biopsy) to see if it is a Celiac related rash DH (there is a forum here all about this rash, those are the initials because damned if I can spell the names right!)

mommy2krj Explorer
mommy2krj
Posted

Umm...sorry I forgot the capital B and the ) make that smiley. I wasn't really meaning to put that there!

nvsmom Community Regular
nvsmom
Posted

Welconme to the board.  :)

 

Mommy2krj is right, false negatives are common in toddlers. Being gluten-free could have affected his results on the first test, and most likely would on the second. kids seem to heal faster than adults and their autoaintbodies seem to often disappear faster.

 

If you decide to retest for blood work, your son will have to eat gluten for 2 or 3 months to get an accurate test.  :( This is the full celiac panel:

  • ttG IA and tTG IgG
  • DGP IgA and DGP igG
  • EMA IgA
  • total serum IgA
  • AGA IgA and AGA IgG

The first three tests indicate there is ongoing damage to the villi. The DGP tests are thought to be the best tests to run on kids. The EMA is in advanced cases of damage and is rarely positive in young kids.  Total serum IgA is a control to make sure you make enough IgA for the other tests to be accurate;5% of celiacs are deficient in IgA. the AGA tests show sensitivity to gliadin and are thought by some to work for both celiac disease and non-celiac gluten sensitivity (NCGS).

 

If you can get a doctor on board to test for deramtiitis herpetiformis (DH) you could arrange to biopsy the area AROUND the rash once it reappears and is active. i don't know as much about DH testing as many others, you might want to check the DH forum on how to test for DH. Some are diagnosed that way.

 

If a gluten challenge is too much for your little guy, please let the doctor know. There are many adults around here who couldn't get through a two/three month gluten trial... it wasn't worth the suffering for them. some doctors will worl with that.

 

Best wishes in whatever you decide to do.

momto3 Newbie
momto3
Posted
  • Author

Thank you! Extremely helpful! I like going in to the doctor and being able to ask good questions.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to Clear2me's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Gluten free nuts

      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to...
    2. trents
      - trents replied to Larzipan's topic in Related Issues & Disorders
      42

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies...
    3. Scott Adams
      - Scott Adams replied to Larzipan's topic in Related Issues & Disorders
      42

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted...
    4. Wheatwacked
      - Wheatwacked commented on Scott Adams's article in Latest Research
      6

      Study Estimates the Costs of Delayed Celiac Disease Diagnosis (+Video)

      Have you had your 25(OH)D vitamin D blood level checked? Vitamin D deficiency occurs in 40 - 60% of western societies. It is even more common in Celiac Disease because of malabsorption syndrome. Appropriate intake of vitamin D or skin production from sun, increases the absorbtion rate of Calcium.and phosphorus, two minerals crucial to...
    5. Wheatwacked
      - Wheatwacked replied to Larzipan's topic in Related Issues & Disorders
      42

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Some backup to my statement about gluten and milk. Some background. When my son was born in 1976 he was colicky from the beginning. When he transitioned to formula it got really bad. That's when we found the only pediactric gastroenterologist (in a population of 6 million that dealt with Celiac Disease (and he only had 14 patients with celiac disease...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,387
    • Most Online (within 30 mins)
      7,748
    LizzieE
    Newest Member
    LizzieE
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Gluten free nuts

      By Aretaeus Cappadocia · Posted

      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to see if they can get you the gluten-free version (they are tasty) > This past week I bought "Sliced Raw Almonds, Baking Nuts, 5 lbs Item 1495072 Best if used by Jun-10-26 W-261-6-L1A 12:47" at Costco. The package has the standard warning that it was made on machinery that <may> have processed wheat. Based on that alone, I would not eat these. However, I contacted customer service and asked them "are Costco's Sliced Almonds gluten free?" Within a day I got this response:  "This is [xyz] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response:  This item does not have a risk of cross contamination with gluten, barley or rye." Based on this, I will eat them. Based on experience, I believe they will be fine. Sometimes, for other products, the answer has been "they really do have cross-contamination risk" (eg, Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs Item 1195303). When they give me that answer I return them for cash. You might reasonably ask, "Why would Costco use that label if they actually are safe?" I can't speak for Costco but I've worked in Corporate America and I've seen this kind of thing first hand and up close. (1) This kind of regulatory label represents risk/cost to the company. What if they are mistaken? In one direction, the cost is loss of maybe 1% of sales (if celiacs don't buy when they would have). In the other direction, the risk is reputational damage and open-ended litigation (bad reviews and celiacs suing them). Expect them to play it safe. (2) There is a team tasked with getting each product out to market quickly and cheaply, and there is also a committee tasked with reviewing the packaging before it is released. If the team chooses the simplest, safest, pre-approved label, this becomes a quick check box. On the other hand, if they choose something else, it has to be carefully scrutinized through a long process. It's more efficient for the team to say there <could> be risk. (3) There is probably some plug and play in production. Some lots of the very same product could be made in a safe facility while others are made in an unsafe facility. Uniform packaging (saying there is risk) for all packages regardless of gluten risk is easier, cheaper, and safer (for Costco). Everything I wrote here is about my Costco experience, but the principles will be true at other vendors, particularly if they have extensive quality control infrastructure. The first hurdle of gluten-free diet is to remove/replace all the labeled gluten ingredients. The second, more difficult hurdle is to remove/replace all the hidden gluten. Each of us have to assess gray zones and make judgement calls knowing there is a penalty for being wrong. One penalty would be getting glutened but the other penalty could be eating an unnecessarily boring or malnourishing diet.
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies also indicate the amount of gliadin in human breast milk is miniscule and unlikely to cause reactions:  https://www.glutenfreewatchdog.org/news/gluten-peptides-in-human-breast-milk-implications-for-cows-milk/ I would also point out that Dr. Peter Osborne's doctorate is in chiropractic medicine, though he also has studied and, I believe, holds some sort of certifications in nutritional science. To put it plainly, he is considered by many qualified medical and nutritional professionals to be on the fringe of quackery. But he has a dedicated and rabid following, nonetheless.
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted, still intact and immunogenic, into the milk. The cow's digestive system is designed to break down proteins, not transfer them whole into milk. This is not a recognized pathway in veterinary science. The provided backup shifts from cow's milk to human breastmilk, which is a classic bait-and-switch. While the transfer of food proteins in human breastmilk is a valid area of study, it doesn't validate the initial claim about commercial dairy. The use of a Dr. Osborne video is a major red flag. His entire platform is based on the idea that all grains are toxic, a view that far exceeds the established science on Celiac Disease and non-celiac gluten sensitivity. Extraordinary claims require extraordinary evidence, and a YouTube video from a known ideological source is not that evidence."  
    • Wheatwacked
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Wheatwacked · Posted

      Some backup to my statement about gluten and milk. Some background.  When my son was born in 1976 he was colicky from the beginning.  When he transitioned to formula it got really bad.  That's when we found the only pediactric gastroenterologist (in a population of 6 million that dealt with Celiac Disease (and he only had 14 patients with celiac disease), who dianosed by biopsy and started him on Nutramegen.  Recovery was quick. The portion of gluten that passes through to breastmilk is called gliadin. It is the component of gluten that causes celiac disease or gluten intolerance. What are the Effects of Gluten in Breastmilk? Gliaden, a component of gluten which is typically responsible for the intestinal reaction of gluten, DOES pass through breast milk.  This is because gliaden (as one of many food proteins) passes through the lining of your small intestine into your blood. Can gluten transmit through breast milk?  
    • trents
      Shingles - Could It Be Related to Gluten/ Celiac

      By trents · Posted

      I don't know of a connection. Lots of people who don't have celiac disease/gluten issues get shingles.
×
×
  • 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.