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. TheDHhurts
      - TheDHhurts posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Prana Organics no longer GFCO-certified

      I've been buying my seeds and nuts from Prana Organics for a number of years because the products have been GFCO-certified. I just got a new order delivered of their flax and sunflower seeds, and it turns out that they are no longer GFCO-certified. Instead, it just has a generic "Gluten Free" symbol on the package. I reached out to them to ask what...
    2. cristiana
      - cristiana replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK. Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs. If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend...
    3. trents
      - trents replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods". Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy...
    4. Dizzyma
      - Dizzyma posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her on a full gluten free diet. my concerns are that she wasn’t actually physically s...
    5. Scott Adams
      0

      Better-Than-Takeout Gluten-Free Chicken Fried Rice

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,926
    • Most Online (within 30 mins)
      7,748
    Kptaylor
    Newest Member
    Kptaylor
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • TheDHhurts
      Prana Organics no longer GFCO-certified

      By TheDHhurts · Posted

      I've been buying my seeds and nuts from Prana Organics for a number of years because the products have been GFCO-certified. I just got a new order delivered of their flax and sunflower seeds, and it turns out that they are no longer GFCO-certified. Instead, it just has a generic "Gluten Free" symbol on the package. I reached out to them to ask what protocols/standards/testing they have in place. The person that wrote back said that they are now certifying their gluten free status in-house, but that she couldn't answer my questions related to standards because the person with that info was on vacation. Not very impressed, especially since it still says on their website that they are GFCO-certified. Buyer beware!
    • cristiana
      Newly diagnosed mam to coeliac 11 year old

      By cristiana · Posted

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Newly diagnosed mam to coeliac 11 year old

      By trents · Posted

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
×
×
  • 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.