Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 And Confused


Guest aimees

Recommended Posts

Guest aimees

Wow I love this site. I have learened more info from everyone here than I have learned from the doctors. My son is 7. He has been vommiting and having diarrea for about 3 years. It is not constant though. He "gets sick" about three time a month. I read the Febuary issuse of Parents Magizine, and found the article about Celiac. I asked my ped. to test him and it acame back that yes he did have Celiac. Now before this. The GI specialist At DUKE said he had abdominal migraines, and wanted to place him on steroids, to " fatten him up. Can you believe that? So now after taking him off gluten, he was a different child, the circles under his eyes were gone, and when he was hungry he will now eat and stay full. The bad thing now however, he did not have a biopsy right away. So now I have to put him back on gluten so we can see the damage. He was gluten free for two weeks. Now he has to be on gluten for two weeks before his procedure on May 16 at Duke. Im frustrated and angry that all this was not explained to me by the specialist to begin with. My ped. told me to take him off gluten as soon as we got the blood test back. I did that and then I bought the book by Danna Korn, found out about all the other testing and began asking questions that ginally led to where we are now, which is basically at the beginning. Now I just glad to be able to get all of this off my chest. I dream about reading labels and shopping in the "speciality stores" My son lso has IgA defficiency, are there any specific questions I should ask the doctor at Duke?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Guest aramgard

Please, do not take this the wrong way. I am a nearly 70 year old Celiac, just diagnosed 3 years ago. I have been having problems since I was agout 8 or 9 years of age. If your son is doing better on a gluten free diet and it t'were me, after what I have been through, I would not bother with the blasted testing further, but put him on a gluten free diet and never look back if he responded. This is a brave new world of doctors who simply do not understand what Celiac is about, and many of them are just too stubborn to admit that they do not know what to do about this disease. If your son responds to the diet, teach him how to eat according to what he can eat without causing him to become ill and do not look back. I am the poster child for misdiagnosis. I do not want another generation of children to become victims of our health care system. Shirley

tarnalberry Community Regular

I agree w/ aramgard... I had inconclusive blood tests, but positive results on the diet, and that's all I really care about. If your doctor won't take the results of a dietary challenge seriously, AND you still care that it is clearly documented on his records (AND you don't want to try a different doctor), then maybe. But there are pros and cons to having it on your medical record (difficulty getting insurance later in life versus not having it known if your unconcious, etc...).

wildones Apprentice

I agree with the other posts. Why would you put him back on gluten to confirm what you already know ??? Especially going back to the same place that totally missed the diagnosis in the first place. The purpose of the biopsy is to see how much damage has been done to the upper GI tract (if any yet) to see how far things have progressed. There is not anything that would be done differently as far as treatment (the gluten-free diet is how you treat celiac disease) if celiac disease was 'officially' diagnosed. If your son has confirmation with the blood work and most importantly confirmation with improvement on the diet. Why give him the harmful gluten ? You can be gluten intolerant and not yet have damage to the villi yet.

I have heard the argument several times on this board that an official diagnosis would be needed if a patient was unconscious and in the hospital, and I don't see any possible scenario where that would be needed. If you are unconscious and in the hospital you are not being fed by mouth ! IV feeds as far as I know (my son was on IV feeds for 6 months) does not have gluten in it. If you are conscious (or if your child is conscious and in the hospital and you are speaking for them) then you can let them know about dietary restrictions and Rx restrictions that are taken orally.

General medical records are not obtained when a patient is in critical condition or when they go into the ER. One of my sons has had a very long and complicated medical history. Between him and his brother and sister (triplets) I have made many, many trips to the ER and have seen 19 different specialists, some of them very frequently. None of them have ever asked me to PROVE that my son has celiac disease, they take your word for it !!!!!!

I feel very strongly that if you have confirmation another way, that a biopsy is not necessary, and can actually be harmful in the long run. A lot of doctors will say if they do not see any evidence of flattened villi, then to go back to eating gluten, and it is not a good idea to do that !!!!

A endoscopy is not a big deal as far as I am concerned (my son has had 32 surgeries and proceedures and I see it the same as some might see a very minor thing, like stitches or whatever ...). I do think if enough biopsies are not obtained or the right lab is not looking at the slides (they are not looking for increased lymphocytes) then you can be given very bad advice as far as resuming gluten, if not in the hands of a very experienced GI dr.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,332
    • Most Online (within 30 mins)
      7,748

    MJ Momot
    Newest Member
    MJ Momot
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • N00dnutt
      The best way to determine positively is to undergo a Gastroscope. Your Endocrinologist will assess the condition of your "Villi". These tenticles are what extract the nutrient from what we ingest. The Protein in Gluten is like acid to these tenticles.
    • trents
      It occurs to me that this might be a good application for gluten test kits, since the test kits seem to require samples in power form and pills can easily be rendered in that form. According to this article, and it seems to be current, there are three choices when it comes to gluten test kits: https://www.verywellhealth.com/gluten-detectors-and-test-kits-comparing-the-options-4126736 While it is not an inexpensive solution, at least it shouldn't be necessary to use very often once you establish a med either is safe or not.
    • maryannlove
      Same problem in Pittsburgh.  Have Hashimato's so been taking Mylan (generic) levothyroxine for many years.  Pharmicist tried to routinely order yesterday and called to tell me it's unavailable.  That I could try to find elsewhere and have script forwarded to them.  Just spent couple of hours online researching.  What a pain for so many of us!  Using http://glutenfreedrugs.com/newlist.htm (which know is old and doubt updated) reminded me that long ago I used to take Sandoz brand.  Just went on their website and appears they no longer make (maybe why switched to Mylan).  Back to square one.  Using chart from glutenfreedrugs.com says for manufacturers I'll list afterwards "Manufacturer doesn't knowingly add gluten, however since they don't do any final testing they won't guarantee it to be gluten-free but it is very unlikely that it is contaminated with gluten."  Might be best I/we can do.  Along with Mylan, those manufacturers on chart are: Lannett (per website still make) and Neopharma (didn't find on their website).  Paloma Health's website says CERTIFIED gluten free are:  Lannet brand of levothyroxine, Nature-Thyroid, Tirosint (expensive), WP Thyroid.  Other thyroid meds that are gluten-free but not certified:  Levoxyl, Synthroid, Euthyrax, Mylan Brand (wish could get), and Armor with a caution contains sodium starch glycate which may contain gluten.  I'll submit Lannett to pharmacist.  If successfull, will share.  
    • somethinglikeolivia
      Responding to both of your replies: thank you so much!! That makes a lot of sense and helps me feel better about it - I really appreciate the clarification and recommendations. You guys have been very helpful and this site is a gift. Thanks again! 
    • trents
      I think giving attention to the main sources of exposure such as direct consumption of gluten and gross cross contamination with reasonable attention to handwashing and thorough counter top cleaning and dishwashing should cover cross contamination issues. The biggest precautions would be eating in restaurants and at other's homes. Don't get paranoia over it and don't make trouble where there is none. As far a what you communicate with your physicians, just tell them what you know. Strongly positive antibody tests, negative biopsy, positive symptoms when consuming gluten with clearing of symptoms when gluten free.  
×
×
  • Create New...