Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Latest Adventure With Ped Gi
0

8 posts in this topic

According to celiac blood test (not complete panel) 4 years ago and negative endoscopy biopsy results last September, my daughter does not have celiac disease. After being in pain for years and having "unexplained" failure to thrive, growth hormone deficiency, pancreatic insufficiency, chronic gastritis, mouth ulcers, constipation, etc., we put her on a gluten free diet in March after Enterolab results indicated gluten sensitivity. The change in how she feels, looks, etc. has been phenomenal.

I don't want to make this post too long but we switched back to our original Ped GI doc and he was not the one who scoped her. He has suggested that we put her back on gluten and rescope to see if she does indeed have celiac disease.

She has been through so many tests (cystic fibrosis, h.pylori, growth hormone tests, gi endoscopy, MRIs of head and stomach, etc.) that I don't want to put her through a gluten challenge and another scope. A couple of times that she has gotten glutened over the past six months, the pain has been horrible for her (crying for hours). I feel like she is starting to "heal" and adjusting to a gluten free way of life so why put her though this process again. I said no to a rescope. Am I wrong?

By the way, since going gluten free her pancreatic insufficiency test has come back normal, constipation is no longer an issue, and no mouth ulcers. Her stomach aches have gone from 5-6 per week to an occasional stomach ache. I feel like we have our answer but it seems like since I figured it out when the doctors could not, they seem less inclined to believe it. Why can't her positive response to gluten free diet be enough?

0

Share this post


Link to post
Share on other sites


If you were to sentence someone in a court of law to eat gluten when they do not tolerate it, I believe that would be classified as cruel and unusual punishment. And yet that is what your doctor is proposing for your little girl. How many chances do doctors think we should give them to "get it right".

You seem to have made the diagnosis to your satisfaction and I am sure to your daughter's satisfaction. If I were you I would tell the doctor that it is obvious that she is gluten intolerant and if they couldn't find celiac disease before, she either does not have it or they did not do enough blood tests or take enough samples during the scope (how many did they take?) They are not going to get a "do over" at your daughter's expense. I would also ask him to give you a letter diagnosing her as gluten intolerant that you can use when necessary during her schooling.

This is all, of course, dependent on your not needing the diagnosis of celiac for some reason.... I am just stating how I feel about it. And you did not mention how long a challenge he was proposing. But it still sounds barbaric with the symptoms she has had.

1

Share this post


Link to post
Share on other sites

No, you are not "wrong."

Because the doctor knows you have insurance that will reimburse him for screwing up her diagnosis again, because now the chance of it being negative is even higher, you did the right thing.

What a sadistic son of a .......... <_<:angry:

This is the equivalent of going to a new doctor 7 months after recovering from an infectious disease, and the doctor saying

"why don't we re-infect you with the bacteria, and then I can run a culture and treat you with a better (more $expensive$) antibiotic."

1

Share this post


Link to post
Share on other sites

I agree and think you were absolutely correct to refuse the repeat endoscopy. Aside from being cruel - there is no guarantee that a challenge would produce positive biopsy results - while it would certainly harm your daughter's health.

Should you find you need a diagnosis for school or other reason in the future - perhaps you can try a GI that specializes in Celiac Disease - or even her primary doctor may be willing to provide proof of diagnosis based on her history. I can tell you that we have not had to provide any documentation for my kids that tested negative, but had severe health problems resolve once gluten-free.

Perhaps the doctor would like to consume a just a little ground glass each day so we can check if there is any damage after a few months ;)

0

Share this post


Link to post
Share on other sites

Thanks Mushroom. That is exactly how I feel. I just wanted confirmation that I was not being crazy for refusing to put my daughter through that. I cannot stand the thought of going back to how she used to feel.

My main goal is to have documentation when needed for school. With or without the scope, I believe the GI doctor will work with us on that.

0

Share this post


Link to post
Share on other sites

Thanks Takala and Gottaski. I have to admit, I was surprised that he even suggested it after my going over all the issues that have resolved after going gluten free.

0

Share this post


Link to post
Share on other sites

No, you are not "wrong."

Because the doctor knows you have insurance that will reimburse him for screwing up her diagnosis again, because now the chance of it being negative is even higher, you did the right thing.

What a sadistic son of a .......... <_<:angry:

This is the equivalent of going to a new doctor 7 months after recovering from an infectious disease, and the doctor saying

"why don't we re-infect you with the bacteria, and then I can run a culture and treat you with a better (more $expensive$) antibiotic."

LOL, we are on the same page. The phrase that came to my mind was "No )(%$^**( way!

0

Share this post


Link to post
Share on other sites

I'm with you. I made a very similar decision to not do a scope with a gi who had proven herself ignorant of celiac. When she called me and said, "I've never seen a child get a negative blood test and then get a positive biopsy but I GUESS it does happen", I just knew I didn't want this person scoping my child and profiting from it. I'm sure she has sent tons of celiacs away from her practice because she doesn't believe they can have it and/or doesn't know how to recognize it. Honestly I don't want her to have my insurance company's money or mine!

So I decided to switch to a specialist in Celiac. I'll go see her but it will be another month. I couldn't get in for an INITIAL visit any sooner than a month, which would mean another month for a scope. I just tested positive for celiac. My son has it. I wouldn't have him keep eating paint to see if the paint has lead in it. He'll go gluten-free for six months and we'll observe him. If a doctor doesn't diagnose based on that, I'll keep looking for one who does!

OP, I'm feeling a little uncertain too because I like to follow the rules. But seeing your post about your daughter's progress (my son is very similar) gave me hope. And you reminded me what really matters, the health of our kids. Thanks for that!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      102,674
    • Total Posts
      914,381
  • Topics

  • Posts

    • Itchy skin
      Cool compresses may help a bit. Hot baths or showers used to really aggravate my itchy skin so go with warm or cool ones to see if it helps. Keep well hydrated both inside and out. Be sure to check and make sure any lotions you use are gluten free. Shea butter, olive or coconut oil may help. Since you say this is not DH, no blisters etc. I would not advise Dapsone. It is quite a toxic med but if you do talk to your doctor about it make sure that they do blood work before prescribing and frequently during the time you are on it.  Some celiacs have liver impact and Dapsone can be damaging to the liver. I also had both DH and the all over itchies. Being strictly gluten free and avoiding obvious sources of iodine like iodized salt or iodine in supplements will help you heal. I hope you get some relief soon.
    • Where do I start??
      I will be going for my endoscopy on Februry 19. The other day in reading about Celiacs, I read about the strange rashes often associated with celieacs and gluten intolerrance. About six months ago, a rash exactly as you describe showed up on the backs of my knees. The doctor didn't know what it was, hought maybe it was ringworm, and gave me some topical medicine, and the spots did go away with time. However, I've had the same type of spots show up in other places occassionally. I know for a fact they were not ringworm.
    • Advice on reintroducing dairy.
      I can!   Start with hard cheeses, then yogurt/butter, soft cheeses and finally milk/cream.  Start slowly and build.  Give yourself time to get your body to release the enzymes necessary to digest lactose.  Certified gluten-free enzymes for lactose can help the transition.  Lactose free milk and ice cream are helpful too.  Remember, that genetically some of us are predisposed to being lactose intolerant no matter what (e.g. aging, race).   I wish you success!      
    • Gluten free diet, positive celiac screen...what should I eat now?
      Here is a link that explains why you should get tested (completely) for celiac disease: https://celiac.org/celiac-disease/diagnosing-celiac-disease/diagnosis/ As far as the link to the functional doctor....why?  If you get a celiac diagnosis, chances are you will heal on a gluten free diet.  As you have probably seen on this forum, most of us encourage newly diagnosed members to eat a whole-foods, easy-to-digest (a.k.a "cooked to death")  gluten-free diet to speed healing.  Going Paleo might not be the best right now, if you have celiac disease.  Eating lots of nuts, raw fruits and veggies can be tough on a damaged gut.  You can try that diet later!   Everyone is different due to various degrees of damage, so some may have temporary intolerances  (e.g. lactose).  You just have to experiment.   Save your money and spend it on good wholesome food.  I heartily support getting away from the SAD (Standard American Diet).   Celiac disease is the one autoimmune disorder that is healed by avoiding a food -- gluten!  
    • Itchy skin
      I have DH and itchy skin is a symptom.     Your Dermatologist could write a script for Dapsone, provided you're not allergic to Sulphur.     Expect blood labs to go with using Dapsone.      You need to study everything that goes in your mouth for possible gluten content, including all meds.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      59,700
    • Most Online
      1,763

    Newest Member
    Valou
    Joined