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

wvasweetness

Advanced Members
  • Posts

    6
  • Joined

  • Last visited

wvasweetness's Achievements

  1.   On 2/20/2013 at 7:43 PM, ravenwoodglass said:

    With the reactions this little guy has it is inconcievable to me that a doctor would want to do this to him. Can you find another doctor with some common sense who might give you an 'official' diagnosis based on his symptoms and the resolution of them on the diet? There is no way I would do this to my child but ultimately the choice is yours alone to make. Do keep in mind that even after the challenge he may have negative test results. Ask yourself what you will do if that happens. Will you put him back on a gluten diet? If the answer is no then I would tell the doctor to take a long walk off a short pier.

     

    Yes, this is our greatest fear.... that he will be severely sick for a month, have the test done and it comes back negative.

     

     

      On 2/21/2013 at 12:03 AM, Takala said:

    My current doctor has agreed to consider me a patient who avoids gluten, or gluten- intolerant, or "allergic" to gluten, for the purpose of dispensing medications, etc, on my records, after I told him hell would freeze over before I would ever be forced to consume it again (after 5+ years off of it, and a resolution of many chronic symptoms).  While this does not give me an official seal of celiac diagnostic approval, it does go along with the medically verified other test results I had, quite visible to the naked eye bone loss,  (my c- spine looked shocking) and brain lesions, aka "bright spots,"  which showed on a scan, which are consistent with the neurological form of celiac/gluten intolerance/whatever the "experts" want to call it this week.  I have subsequently told medical people I_Am_Gluten_Intolerant_NO WHEAT GRAIN FAMILY_Do_Not_Give_Me_Exposure_To_It, and have never been questioned on it.  The only 2 other situations I could think of possible impact would be in a boarding school, (hypothetical, too old) where, since I have other allergies anyway, it would be treated as just - another - food -allergy, or a work situation, where, since I would not take a job whereby I could not pack a meal & snacks if I needed one, it's moot.  "Allergies"-  mold, dust, ragweed, wheat rye barley (and a few others...)  Not the end of the world.  I trade off the technical accuracy of it is really some sort of auto immune reaction, for the inaccurate form of understanding by the general public, which can protect me better in these circumstances.  There is no question I have auto immune stuff, closely associated with it, I've been previously diagnosed with it, even if the one stupid HMO attempted to "fibromyalgia" me.  

     

    Since it is an observable phenomena that the child gets severe symptoms when ingesting gluten, then that may have to be it.  

     

    There is no reason that any doctor shouldn't be willing to scope a small child right now, who is displaying such symptoms, even if the test came back negative, which could happen anyway even if he WAS put back on gluten for an extended period of time, the end result is going to be the same-  he isn't going to be eating gluten anymore.  Unless you continue to feed it to him and make him sick.  Which would be illogical and inadvisable.  But a baseline scope should be done anyway.   The entire concept of sickening a tiny, defenseless child deliberately and drastically, for diagnostic purposes only, needs to be revisited on ethical grounds, in my opinion.  I believe in the future they will come up with a better way to diagnose celiac, just as a result of this supposed medical "cure" or "treatment" that these researchers are currently working on.  

     

    The diagnostic guidelines for an official diagnosis are typically given for medical insurance reimbursement purposes in the USA, specifying doctors can't do (hypothetical) needed procedures #2 and #3 unless the first procedure #1 gives a certain result.  They go ahead and scope some people and children who do not test bloods positive, if the symptoms upon ingestion of gluten are still severe enough....  so what is the hold- up, really ?  

     

    They are only willing to scope him after a MINIMUM of 4 weeks on a gluten diet.  We say the same - the end result is the same: if it's negative, he won't have gluten... if it's positive, he won't have gluten.

    Yes, we are just now joining the frustration with (lack of) testing options...

     

     

      On 2/21/2013 at 12:58 AM, frieze said:

    If a parent persists in feeding a child something that that child is intolerant of to the point of being ill, who do you think the docs would be calling???  But it is ethical and legal for them to demand it be done, to get a diagnosis???

     

    I know, it doesn't at all seem right to be able to say "well, I know that forcing your toddler to eat gluten will make them sick and potentially hospitalize him, but go ahead and do it and we will do a test that may or may not be accurate."  :(

  2.   On 2/19/2013 at 7:02 PM, kareng said:

    My suggestion is that you , or even better, the doctor, email the experts. Dr. G is actually a ped doctor, I think. I'm thinking they may tell you he is too young to produce enough antibodies. If that is the case, it will save you from doing it twice - now and a couple of years along.

    Open Original Shared Link

     

    I didn't even know this was possible - to be too young to produce the antibodies necessary to get a positive diagnosis through antibodies.

  3. We have discussed potential testing for our 16 month old son for several months.  However, his very severe symptoms when he is exposed -  even CC exposure - are preventing us from moving forward.  Our pediatric gastro recommends he be on a diet with gluten for a minimum of 4 weeks prior to testing.  Both she and our pediatrician agree that exposure for 4 weeks would most likely hospitalize him because of dehydration and other symptoms.  Even "minor" exposure leaves him covered in eczema, writhing in pain (crying for hours at a time) with severe reflux and diarrhea for at least 48 hours, often longer.  He also exhibits neurological issues, like walking directly into walls and hitting his head against the floor.

     

    Even though we are somewhat medically conservative, we recognize the need for an official diagnosis.  What we ARE questioning is the best time to move forward with the testing.  Doing it now would mean that our son would retain few (if any) memories of the testing or the sickness he will certainly endure prior to testing.  However, at this age he can't voice symptoms/pains to us.

     

    Any input on this?  Has anyone dealt with severe symptoms during the 4-6 week period of gluten intake prior to testing and/or potential hospitalization because of it?

  4. Short back story: Our now 15 month old starting having "virus like" symptoms at 6 months old (coincidentally at the same time we started feeding him cereal in his baby food). 40 doctors appts and 4 weeks of screaming 20 hours/day later I did some "Google research" and saw that pretty much all of his symptoms mapped to Celiac/gluten intolerance. Our pediatrician dismissed the idea of gluten being the culprit... we took gluten out of his diet and he was 99% better within 4-5 days.

    The only blood work he had while he was on gluten was tTg, which was 290. Had I known then what I know now, and had our doctor been more knowledgeable, we would have had more testing done at that time. We now know that since he is gluten free he can't have the blood work or biopsy done with any accurate results.

    We have since started going to a good pedi GI who suggests testing. Considering our son's severe reaction during the time that he was getting gluten, I'm afraid that getting gluten for an extended period of time (prior to testing) could go as far as hospitalizing him. During the time that he was getting gluten - and subsequently when he has accidentally been exposed - he screams non-stop for 18-20 hours/day without sleeping for more than 2-4 hours/day, has all of the "text book" gastro symptoms, and even does things like purposefully banging his head on things. It's awful.

    It's importatnt to us that he get a diagnosis, but at what cost? He does SO amazingly well gluten-free. The thought of poisoning him just to get testing for a diagnosis is sickening.

×
×
  • Create New...