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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,998
    • Most Online (within 30 mins)
      7,748
    Wendy Jo
    Newest Member
    Wendy Jo
    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

    • trents
      Chances of being coeliac

      By trents · Posted

      If this applies geographically, in the U.K., physicians will often declare a diagnosis of celiac disease based on the TTG-IGA antibody blood test alone if the score is 10x normal or greater, which your score is. There is very little chance the endoscopy/biopsy will contradict the antibody blood test. 
    • JoJo0611
      Chances of being coeliac

      By JoJo0611 · Posted

      TTG IgA reference range 0.0 to 14.9 KU/L
    • trents
      Chances of being coeliac

      By trents · Posted

      What was the reference range for that test? Each lab uses different reference ranges so a raw score like that makes it difficult to comment on. But it looks like a rather large number.
    • JoJo0611
      Chances of being coeliac

      By JoJo0611 · Posted

      I have had the tTG-IgA blood test my result are >250.0  I am waiting for the appointment with the gastroenterologist for endoscopy and biopsies.    what are the chances it’s not coeliacs.  waiting and not knowing is so hard. Especially the eating of gluten knowing it may be causing you more harm and coping with the symptoms. 
    • knitty kitty
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By knitty kitty · Posted

      @sleuth, Has your son been checked for nutritional deficiencies?  All of those symptoms can be caused by malnutrition.  I had severe malnutrition that went unrecognized by my doctors.  Intense fatigue, brain fog, depression, anxiety, and gastrointestinal distress are symptoms of deficiencies in the eight essential B vitamins, especially Thiamine B1, which becomes low first because the demand is higher when we're sick.     Celiac Disease causes inflammation and damage of the intestinal lining which inhibits absorption of essential nutrients.  Checking for nutritional deficiencies is part of proper follow up care for people with celiac disease.   Is your son taking any vitamin supplements?  Most supplements contain thiamine mononitrate which in not readily absorbed and utilized by the body.  Benfotiamine is a form of thiamine that is shown to promote intestinal healing.  Benfotiamine is available over the counter.  Benfotiamine is safe and nontoxic.   Is your son eating processed gluten-free foods?  Gluten-free processed foods are not required to be enriched with vitamins like their gluten containing counterparts.   Is your son following a low histamine diet?  Histamine is released as part of the immune response to gluten and other foods high in histamine.  High levels of histamine in the brain can cause anxiety, insomnia, and depression.  The body needs the B vitamins to make the enzyme Diamine Oxidase (DAO) to break down and clear histamine.  DAO supplements are available over the counter.  Vitamin C helps clear histamine as well.  Some people find over the counter antihistamines helpful as well, but they're not for long term use.   Nicotine has antihistamine-like properties, but can also irritate the gut.  Tobacco, from which nicotine is derived, is a nightshade (like tomatoes, potatoes, peppers and eggplant).  Nightshades contain alkaloids which affect gastrointestinal permeability, causing leaky gut syndrome.  Nicotine can cause gastrointestinal irritation and alter for the worse the microbiome. Safer alternatives to Nicotine that have antihistamine properties include Lemon Balm (Sweet Melissa),  Passion Flower, Chamomile, and Bilberry.  They can be taken as supplements, extracts, or tea.  These will help with the anxiety, insomnia and depression in a much safer way. Oolong tea is also helpful.  Oolong tea contains the amino acid L-Theanine which helps the digestive tract heal.  (L -Theanine supplements are available over the counter, if not a tea drinker.)  Tryptophan, a form of Niacin B3, also helps calm digestive symptoms.  Another amino acid, L-Lysine, can help with anxiety and depression.  I've used these for years without problems.   What ways to cope have you tried in the past?
×
×
  • 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.