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

Do I Try To Educate Ped Gi Or Just Move On?
0

6 posts in this topic

My eight year old has been gluten free for 3.5 weeks. She feels better than she has in a very long time. No stomach aches and she is happy again.

She has not been diagnosed with Celiac Disease (blood test and biopsy negative) but through Enterolab lab we got the following results last month:

Fecal Anti-gliadin IgA 163 Units (Normal Range is less than 10 Units)

Fecal Anti-tissue Transglutaminase IgA 58 Units (Normal Range is less than 10 Units)

DQ7 and DQ9

At our last GI appointment in January, he talked about how stress can cause stomach aches and that it is common for children at this age to have stomach aches. He did not give her a physical exam (did not press on her belly or anything). I told him she had been constipated. Within three days of that appointment, she was in some of the worst pain of her life. I thought seriously about taking her to the hospital. The pain came and went over several days so I took her to her local pediatrician who felt her belly and said she was very constipated and suggested that we do an enema that day. She was so severely constipated that two weeks after her GI appointment and a week on miralax, her constipation still showed up on her abdominal CT scan (everything else was normal).

We are suppose to have another Pediatric GI appointment in a couple of months. The last conversation I had with this Doctor, he told me it was "functional abdominal pain" and to IGNORE HER PAIN. This after she has been diagnosed with idiopathic growth hormone deficiency, pancreatic insufficiency (fat malabsorption), constipation, acid reflux, severe lactose intolerance, and failure to thrive.

Part of me wants to take in some research articles on gluten sensitivity and her test results and talk about how well she is doing going gluten free. Maybe it would help other children that he treats. The other part of me NEVER wants to see him again.

What should I do?

Thanks,

Kristy

0

Share this post


Link to post
Share on other sites


Ads by Google:

I am not sure about the genes. My celiac is DQ2/DQ8. Not sure about the others. The blood tests are wayyy high though. Have you had her thryoid checked? Constipation is a big sign of that, too. My daughter had thryoid problems and celiac. I would ask for the anti-endomysial antibody test done. It will either say "Positive" or "negative". That antibody test is supposed to be 99% sure of celiac. Scoping would be up to you. I scoped my daughter to make sure when hers was positive and she had blunting. I do not know much about enterlab but my daughter had 2 blood tests within 2 weeks of each other (no diet change) One showed her Ttg 164 and one showed 7. That's a big gap! My pediatrian ran all the blood work. Just ask for a lab that tests for the EMA (antiendomysial antibody) because not all labs are able to do that.

0

Share this post


Link to post
Share on other sites

I am not sure about the genes. My celiac is DQ2/DQ8. Not sure about the others. The blood tests are wayyy high though. Have you had her thryoid checked? Constipation is a big sign of that, too. My daughter had thryoid problems and celiac. I would ask for the anti-endomysial antibody test done. It will either say "Positive" or "negative". That antibody test is supposed to be 99% sure of celiac. Scoping would be up to you. I scoped my daughter to make sure when hers was positive and she had blunting. I do not know much about enterlab but my daughter had 2 blood tests within 2 weeks of each other (no diet change) One showed her Ttg 164 and one showed 7. That's a big gap! My pediatrian ran all the blood work. Just ask for a lab that tests for the EMA (antiendomysial antibody) because not all labs are able to do that.

The test results were stool test for gluten sensitivity from Enterolab. Her blood work and biopsy for celiac disease were negative. She has been gluten free for 3.5 weeks so I am not planning to put her back on gluten for further testing. I am asking if I should try to talk to him about gluten sensitivity or just move on.

0

Share this post


Link to post
Share on other sites

If you decide to try to educate this doc, be sure the info you give him is from medical journals or one of the Medical Celiac Centers like Chicago, Maryland, Columbia or Mayo. Don't give him info from places that are trying to sell a product like Enterolabs or a chiropracter with a big internet practice or posts on here. He will instantly dismiss those as nonsense. Even if the info is good.

Even if you decide not to see him again, you could mail or email him some info.

0

Share this post


Link to post
Share on other sites

If you decide to try to educate this doc, be sure the info you give him is from medical journals or one of the Medical Celiac Centers like Chicago, Maryland, Columbia or Mayo. Don't give him info from places that are trying to sell a product like Enterolabs or a chiropracter with a big internet practice or posts on here. He will instantly dismiss those as nonsense. Even if the info is good.

Even if you decide not to see him again, you could mail or email him some info.

The article I had planned to take is:

Sapone et al.: Spectrum of gluten-related disorders: consensus on new nomenclature and classification. BMC Medicine 2012 10:13.

Abstract

A decade ago celiac disease was considered extremely rare outside Europe and, therefore, was almost completely

ignored by health care professionals. In only 10 years, key milestones have moved celiac disease from obscurity

into the popular spotlight worldwide. Now we are observing another interesting phenomenon that is generating

great confusion among health care professionals. The number of individuals embracing a gluten-free diet (GFD)

appears much higher than the projected number of celiac disease patients, fueling a global market of gluten-free

products approaching $2.5 billion (US) in global sales in 2010. This trend is supported by the notion that, along

with celiac disease, other conditions related to the ingestion of gluten have emerged as health care concerns. This

review will summarize our current knowledge about the three main forms of gluten reactions: allergic (wheat

allergy), autoimmune (celiac disease, dermatitis herpetiformis and gluten ataxia) and possibly immune-mediated

(gluten sensitivity), and also outline pathogenic, clinical and epidemiological differences and propose new

nomenclature and classifications.

0

Share this post


Link to post
Share on other sites




Hi there,

I'm not sure where you live, but if you are near LA, consider seeing Dr. Pietzak at Children's Hospital in Los Angeles. She is a Ped GI AND Celiac researcher. I personally believe the researchers get it more than anyone -- they thrive on figuring out this disease! We don't live in LA and have found it worth the long trips to see her.

In contrast to the experience you list above...Dr. Pietzak felt both our girls' tummies. Our girls are SKINNY (below the growth curves) and she believes they were both bloated and gassy (things we did not catch as parents). She could tap on the girls' bellies and actually hear the hollowness where gas was trapped.

Further, I was opposed to doing endoscopies, but I trust Dr. P so much that we went ahead. One of the girls has a red lesion on her stomach lining = gastritis. We never would have known that piece of the puzzle without having scoped. I'm still not a fan, but it is tolerable in the interest of having a clear picture of a kid's health.

In terms of educating doctors, one part of me believes it's important for the lives of children beyond our own. AND I am a BIG fan of never seeing a bad doctor again.

I'm not in a dissimilar position--our pediatrician refused to test for Celiac...despite LOTS of symptoms...and both our girls are about to be formally diagnosed Celiac. I'm still furious! Our pediatrician could have caught this when the girls were two years old...now they are 5.5 years old. I still debate if we'll ever go back to see him or whether we'll go back and I'll be huffy about the whole thing or whether I can find it in myself to be the better person and gently tell him what has transpired since I got the allergist to do the testing and found a Celiac researcher/ped GI to do what he failed to do...

All in all, I hope so much you can find an excellent Pediatric GI who knows more than you do about Celiac (that was my goal...not to be smarter than my doctor on this!). If you're willing to share your location, I'll try to figure out who might be an expert near you. Alternatively, look at the doctors on the advisory boards of the various Celiac non-profits.

Thinking of you!

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
      104,357
    • Total Posts
      920,528
  • Topics

  • Posts

    • Well, I have never cruised on Carnival, but I am sure they can accommodate you.  I assume that you have already alerted them that you require gluten free meals.  If not, please contact Carnival immediately. Here are my own tips.  Some folks eat off the buffet line, but not me or hubby except for coffee/drinks and baked potatoes (jacketed) and fruit that we wash in the restroom (people touch everything!)  Okay, I am OCD, but my last glutening which occurred the previous summer made me sick for three months (GI tested my antibodies to prove it).   When we board, I go to the buffet restaurant ASAP and ask to speak to the Head Waiter (they are usually there greeting customers and often trying to up sell to specialty restaurants.   Let them know you have celiac disease and must be gluten free.  They may try to tell you that each dish is clearly marked gluten free, but really?  Who's to say that some other passenger is not going to switch spoons (or I have seen passengers wandering around with serving spoons...I kid you not!  The staff usually will  go downstairs and fetch a gluten free meal for me from the main dining room's kitchen as there is usually a dedicated area for allergies.  We have to wait up to 20 minutes or so but it is worth it.  Starving?  Get a baked potato wrapped in foil until your gluten-free meal arrives.  Now, do not do this every single time.  Those folks have to go down several levels to fetch food and you don't want to be a pain.  But if the main dining area is closed, they need to make an effort to keep you safe.  On our last cruise, we were advised not to eat anywhere but the main dining room and that included room service (they are not trained to handled allergies).  My headwaiters have sent goodies (prepackaged gluten free rolls and cookies for us to keep in our room.  We can always grab whole fruit (I wash it first) to snack on.  I bring gluten-free non-perishable items with me to eat while at port in case we can't find anything (which can be often).  Again, when we get back to our ship, we contact our headwaiter and he/she can prepare some snacks until we have dinner.   Be grateful and not picky.   We eat all meals in the dining room (or at least as much as possible).  Our headwaiter had a few other celiacs on our cruise this summer, so they prepared some gluten-free waffles, etc. for our breakfast!  What a treat!  At breakfast, we'd have different waiters, so our headwaiter would always instruct our waiters each and every time!  They even let me tour the kitchen and showed me the allergy section.   The only time I did not feel safe was at the buffet.  We once ordered gluten-free pizza and I realized (I watched) that that restaurant didn't really have the gluten-free thing down), do I called him on it.  Got the manager etc.  So, be careful.  Other cruises made us frozen Udi"s which was just fine with us.  They covered it up in foil so that we would not get any cross contamination from their pizza oven. So, have fun!   Tipping?  We prepaid our gratuities, but we gave our headwaiter an extra $200.00 for his time.  For us, it was well worth the service and safety of our food.  It does not hurt to slip some of the tip ahead of time (like after your first meal!)  
    • <strong>Celiac Disease & Gluten-free Diet Information at Celiac.com. Gluten Free Diabetes ::The 3 Step Trick that Reverses Diabetes Permanently in ... View the full article
    • I had a biopsy done (2 samples, 1 on a lesion and 1 next to lesions), and also more bloodwork done. All came back negative. However, I only had been eating gluten for 2 weeks prior, and it took a week of gluten for lesions to reappear. I also used a topical steroid off and on (1x a week approximately) for a month or so before testing. The dermatologist told me to stay off gluten though, and said she wants to do more allergy testing (her next open testing appt is in 6 months!!). I know I'm not the DR, but I dont think it's allergies...without a doubt, my skin begins clearing about 2 weeks post gluten-free diet...this is without changing anything else in my lifestyle. And when i had to go back on gluten before my biopsy, it took about a week, but did reappear. Now, about 2 weeks post biopsy and gluten-free, it had begun clearing until i worked outside all day in heat, humidity,  sweat etc and it has definitely irritated all the places that were healing (not new breakouts, just aggravating what was going away!). All that being said, i have a friend who is an MD( who's hobby is to attend conferences on skin conditions!), and she has told me that without a doubt, I have celiac/DH.  I think I just feel like I need test results and paperwork to show for it...especially to show family members who are unsupportive (gross understatement!) of the extreme changes I've had to make!
    • Sorry ! I have never cruised before.  Just wanting to follow your topic.  Good luck! Have a great,  safe vacation.  
    • Hi there, I hope you're all having a good day! I'll be heading on a week-long Carnival cruise shortly and had a few questions: -What is the tipping protocol? I've prepaid gratuities, but feel like the food request will warrant something extra. Should I tip the headwaiter? Hostess? Regular waiter? Chef? Those cooking at, say, the sandwich or pasta bars? If so, how much is appropriate, and should I tip at the beginning of the cruise, the end, or split it up? -It looks like the main dining room will be closed during lunch hours on most days. Any recommendations on safe bets for midday meals? I'll be on the Carnival Sunshine, for what that's worth. Thank you so much for any information you can share!  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,432
    • Most Online
      1,763

    Newest Member
    rbeckler60
    Joined