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

I Need To Vent

Caseysmommy

Recommended Posts

Caseysmommy Apprentice
Caseysmommy
Posted

Sorry in advance but I need to vent.....I just got back from the allergist with my 18 month old daughter. She had testing skin and blood testing a month ago and today we were suppose to find out the results. She was tested for misc foods and Celiac disease. Everything came back negative. Im so upset because Casey has been on a gluten free diet 2 months ago and I told them that testing dosent work if she is on this diet and they said it was no problem. Well of course its negative. So the dr. said today Im the mother I should do what I feel is best. AHHHHHHHh I feel like I wasted alot of money I dont have right now for someone to say Im the mother do what I think ahhhh. Well thanks for listening and advice would be great.

Angie

Mom of Casey

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

Celiac.com Sponsor (A8-M):


Jestgar Rising Star
Jestgar
Posted

Ummmmm... You're the mom. Do what you think. Seriously.

If you feel that certain foods are a problem, keep them away from your daughter. You can always deal with retesting when she's older, if you aren't sure. You may find that her reactions to certain foods are so obvious that you don't need testing.

Darn210 Enthusiast
Darn210
Posted

How is she doing now that she is off gluten? Is she still having problems? Have you taken her off of anything besides gluten?

Caseysmommy Apprentice
Caseysmommy
Posted
  • Author
How is she doing now that she is off gluten? Is she still having problems? Have you taken her off of anything besides gluten?

She is doing so much better. She has energy and now dosent have diarahia which she has had all her life. Gluten is all. She is also gaining some weight which was needed she was in 3% for her age.

Angie

dandelionmom Enthusiast
dandelionmom
Posted

Celiac testing is notoriously inaccurate at that age (lots of false negatives). So if she's doing well on the diet, I'd keep her on the diet no matter what the tests say. I'm sorry you didn't get a more definitive answer. That's always hard. :(

wsieving Contributor
wsieving
Posted

I KNOW how frustrating this is. I have recently been through the exact same thing myself (DD is also close in age, she is 15 months). After all the negatives, but the reaction we knew she had from gluten, we took her off of it. She has been gluten-free for a week and a half now, and has already gained 12 ozs! It IS frustrating, I felt like I wasted a lot of money too, but you just have to push through and do what is best for your DD.

crunchy-mama Apprentice
crunchy-mama
Posted

So sorry, doctors can be so frustrating. I ended up doing enterolab's testing to get some kind of answer as our ped wasn't concerned about any symptoms once he saw that he was still on the charts (although at 10% when he was a BIG baby) and has lost weight- not to mention everything else.

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

Celiac.com Sponsor (A8-M):


saraphym Newbie
saraphym
Posted

I say forget the doctors and do what is right for your kid. It sounds like she has really had a positive reaction to the gluten-free diet. You can always get a second opinion if you think that will help, but you can never go wrong in doing what is working and what is right for your child.

MarsupialMama Apprentice
MarsupialMama
Posted

I don't know what your child's status was, but be encouraged by this: Be glad that your doctor said "You are the mom, do what you think is right." In our situation, we have to rather prove to THEM that gluten is the problem, and fight to keep CPS off of our back because our daughter had lost so much weight before we came across the gluten-free idea. Testing was useless for us because we put her on gluten free before we knew about it, and I was NOT going to damage her body more by putting her BACK on gluten when every day of improvement counted in our favor. I would be glad to hear the words "Do what you think is right" instead of "WE are going to tell you what the problem is, and then WE are going to treat it how WE want, and if you don't agree we will take your children away from you for 'medical neglect.'" Doctors are nothing but frustrating as far as I'm concerned (never had a good one I guess), so I understand your situation. I doubt he would have said "Do what you think" BEFORE you invested the money.......... Hang in there!

P.S. By the way (several months later) gluten WAS the problem and now she is thriving well and gaining the weight and the fat back on her body as well as many other incredible improvements.

shayesmom Rookie
shayesmom
Posted
I don't know what your child's status was, but be encouraged by this: Be glad that your doctor said "You are the mom, do what you think is right." In our situation, we have to rather prove to THEM that gluten is the problem, and fight to keep CPS off of our back because our daughter had lost so much weight before we came across the gluten-free idea.

Oh boy is this eerily similar to our story. We also had to "prove" that gluten was our dd's issue (luckily, the at least the blood tests proved other food allergies). Pretty much every piece of advice our pedi gave us was DEAD WRONG for our dd. So when we managed to escape them, I was relieved (the pedi used CPS threats to keep us in her practice and prevent us from seeking other care).

To the OP, I know that it is frustrating to spend a ton of money on tests and not be any closer to an "official" diagnosis. We all want that reassurance that we are doing the right thing for our children. But you have to keep in mind that doctors are only human. And they aren't medical encyclopedias....they are simply educated people practicing in the medical trade. Some are better at it than others. ;)

Quite honestly, I firmly believe that a mom with good instincts is worth about 10 medical professionals when it comes to their child. Follow your gut instinct. It will not fail you.

Wonka Apprentice
Wonka
Posted
Sorry in advance but I need to vent.....I just got back from the allergist with my 18 month old daughter. She had testing skin and blood testing a month ago and today we were suppose to find out the results. She was tested for misc foods and Celiac disease. Everything came back negative. Im so upset because Casey has been on a gluten free diet 2 months ago and I told them that testing dosent work if she is on this diet and they said it was no problem. Well of course its negative. So the dr. said today Im the mother I should do what I feel is best. AHHHHHHHh I feel like I wasted alot of money I dont have right now for someone to say Im the mother do what I think ahhhh. Well thanks for listening and advice would be great.

Angie

Mom of Casey

I have alot of food intolerances (gluten, dairy, soy, all nightshades and all legumes). None of these showed up in an allergy test. Allergy tests are IgE responses and intolerances are generally IgG and IgA immune responses.

I too went gluten free before testing. I didn't know that I had celiac but I had done an elimination diet, because of my fibromyalgia, and discovered the gluten problem on my own. I really complicated the testing when you are gluten free because you need the immune response to detect the problem.

See if you can get a referral to a paediatric GI specialist so that you can get their input on where to go from here. Sometimes they suggest a gluten challenge and sometimes they advice against it, depending on the child.

Caseysmommy Apprentice
Caseysmommy
Posted
  • Author
I have alot of food intolerances (gluten, dairy, soy, all nightshades and all legumes). None of these showed up in an allergy test. Allergy tests are IgE responses and intolerances are generally IgG and IgA immune responses.

I too went gluten free before testing. I didn't know that I had celiac but I had done an elimination diet, because of my fibromyalgia, and discovered the gluten problem on my own. I really complicated the testing when you are gluten free because you need the immune response to detect the problem.

See if you can get a referral to a paediatric GI specialist so that you can get their input on where to go from here. Sometimes they suggest a gluten challenge and sometimes they advice against it, depending on the child.

Thank you all for your input. It has really helped!!

Angie

DanaDee Newbie
DanaDee
Posted
Ummmmm... You're the mom. Do what you think. Seriously.

If you feel that certain foods are a problem, keep them away from your daughter. You can always deal with retesting when she's older, if you aren't sure. You may find that her reactions to certain foods are so obvious that you don't need testing.

That's what I am doing. My 3yo DD tested positive to the the Ig tests, we had a month between that and Ped GI> Out of desperation, I hit my limit one day, after huge temper tantrums, and runny stolls for a year and just took her off gluten. It was an amazing recovery. My father in law has celiac disease, and I am almost 100% certain it is what she has. Someday I may do the challenge for the actual diag in writing. For now what I know best is doing this, she has returned to good health, has firm BM's, sleeps ALL NIGHT LONG ( no more screaming nightmares at 2am), and has gained weight for the first time in a year. To me, this is all I needed right now.

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
      133,327
    • Most Online (within 30 mins)
      7,748
    dnamutant
    Newest Member
    dnamutant
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • 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.