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

New, I Need Advice

krisb

Recommended Posts

krisb Contributor
krisb
Posted

My son is 8. He is little for his age, 10% for weight, and has severe allergies. He is allergic to a lot of foods and also get allergy shots. He has a history of slow growth, fatigue, belly pain, skin rashes ect. He was failure to thrive in his first year and fell off the charts. Now I had brought him to the Dr. because he is always tired and doesn't look good. He had blood work done for the third time. It showed that his iron was normal but his hemoglobin was low and his one thyroid test was low. Between his allergist and his Pediatricain they don't seem to be too concerned. I pushed for them to do the celiac test because he has all the symptoms. The allergist said that the tests came back high suggesting a positive for celiac. He still made me feel stupid for even condidering the fact that he can have celiacs and said he will rule it out with another blood test. we are waiting results on that one. I talked to his pediatricain today and asked him what his thought were on it and he said he thinks he has celiacs. But that was it. He didn't offer any advice. I asked if he should go to a GI Dr. and he said not to worry about it that he will be fine on his new diet. He wasn't concerned at all and that was the end of it. Now what do i do? Do I see a GI Dr. for him? What kind of Dr. treats Celiacs. He has so many food allergies to begin with that it's so hard to feed him. I'm very upset about this. I'm also upset that neither of his Dr.'s are very supportive about it. His allergist made me feel stupid and I don't even know what his diagnoses is and his Ped. says it's celiacs and walks away. Now what? I am convinced that my son has celiacs, it just fits everything. he has so many of the symptoms. I started the diet tonight I just don't know where to go from here.

Thanks,

Kris

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

Celiac.com Sponsor (A8-M):


Carriefaith Enthusiast
Carriefaith
Posted

To be honest, a lot of doctors don't know very much about celiac and leave us on our own (like in your case). They just say start the gluten free diet and that's it. The best info on the gluten-free diet (from by experience) can be found on the internet, in books, and on this website. I would highly suggest going to the bookstore and buying some books on celiac and the gluten-free diet and some recipe books. Feel free to ask questions here on the website :)

KaitiUSA Enthusiast
KaitiUSA
Posted

Doctors are not really up on things when it comes to celiac. Also, celiac is not an allergy so if your allergist did allergy testing then it would not show celiac. Celiac has a separate panel that needs to be done. Also, if the celiac panel was done, which tests were they? Was it the full panel?

Celiac can't be treated by doctors. Only thing you can do is go gluten free and that keeps it under control.

Dietitians, nutritionists, and doctors know nothing about it. Your best bet is to research yourself and this site is a great place to come to for info and support.

krisb Contributor
krisb
Posted
  • Author

Doctors are not really up on things when it comes to celiac. Also, celiac is not an allergy so if your allergist did allergy testing then it would not show celiac. Celiac has a separate panel that needs to be done. Also, if the celiac panel was done, which tests were they? Was it the full panel?

KaitiUSA Enthusiast
KaitiUSA
Posted
His pediatricain did a blood test, I don't know what one, and it came back positive. The allergist got the results and said he didn't like the test that was run so he was running a different one to rule out a false positive. He has 2 Dr.'s working on this and it seems like neither one of them have an idea. The positive was enough for one Dr. but the other Dr. is so determined to rule it out. Even with all the symptoms.

Do you know which tests were run? If you don't I would find out and post them.

Forget the doctor trying to rule it out...he obviously knows nothing about celiac. I would change doctors. I had a doctor spending more time convincing me it was all in my head then actually figuring out what the problem really was.

Carriefaith Enthusiast
Carriefaith
Posted
The allergist got the results and said he didn't like the test that was run so he was running a different one to rule out a false positive.

A very slightly elevated blood test can still be accurate in detecting celiac disease. My grandmother had a mildly elevated tissue transglutamase blood test and she had villi damage in her intestine. Meaning that the blood test was highly specific for the disease.

Guest Lucy
Guest Lucy
Posted

Call the allergist you saw, ask to speak to his nurse and ask her EXACTLY what tests were run, and what they are going to run. Tell them you don't feel like you have enough infor. Then call your pediatrician and do the same thing. You have to tell a Dr when they are doing a bad job, or they don't know.

Second don't be afraid of them. They are just people. Even if they act holier than thou, they are not. I used to be afraid, but since my SIL and COUSIN and Best friend have become Dr.'s I realize they are just like me. I ask questions, and don't let them back out of the room until you are satisfied. You are paying them. They work for YOU!!!!!!!!!

Then when you get the answers you want. Find another pediatrician. Good luck. IT can be overwhelming. We are here to help.

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

Celiac.com Sponsor (A8-M):


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. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.