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
      132,397
    • Most Online (within 30 mins)
      7,748
    Megannnnn
    Newest Member
    Megannnnn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Scott Adams
      Coeliac UK Research Conference 2025

      By Scott Adams · Posted

      Thanks for sharing this!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
      Blood tests low iGA 4 years later digestive issues

      By trents · Posted

      Keep us posted.
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
×
×
  • 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.