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You Guys Won't Believe This One

tiredofdoctors

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tiredofdoctors Enthusiast
tiredofdoctors
Posted

This one is for the books. I went to my ADHD doc for my check-up, started crying about this stupid cerebellar disease among other things. Told her about my blurred and double vision, despite buying some VERY expensive new glasses (which, after all this medical stuff, we can't afford) because the doctor said that my prescription was to blame.

Turns out, my ADHD doc's husband is an opthmalogist who specializes in retinal problems. She asked me if I would consider seeing him. HELLO????? He had me go in last Monday -- saw that I had chronic iritis in both eyes. He started taking a FULL (birth to now) history. He was upset that I've had lower GI problems my whole life, yet no one had referred me to a GI doc. He calls a friend of his who is considered the best in our city, and voila -- I had my appointment today, he drew anti-transglutaminase and anti-endomysial labs, and I have an endoscope and colonoscopy on Thursday.

Saw my neurologist today, also. He said that, even if my labs and biopsy come back negative, he is concerned that the antigliadin antibodies are breaking down the perkinje cells in my cerebellum. He asked me if I would consider going gluten-free regardless. His theory is, even if it isn't related to absorption issues, the antibodies are frying my brain. I said absolutely.

By the way, for all of you who gave me the advice NOT to go gluten-free prior to seeing a GI doc, THANK YOU THANK YOU THANK YOU. When I told him that the OTHER neurologist wanted me to go gluten-free prior to seeing him, his response was -- "I HOPE YOU DIDN'T" -- that would do me no good. You guys are GREAT. Thank you so much -- if I had gone gluten-free, I would have had to wait a REALLY long time to have my biopsy.

My advice -- if you're having eye troubles, find a good opthmalogist -- that may be the quickest way to get to the GI doctor!!!!!!!!!!!!

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granny Rookie
granny
Posted
he drew anti-transglutaminase and anti-endomysial labs, and I have an endoscope and colonoscopy on Thursday.

Saw my neurologist today, also. He said that, even if my labs and biopsy come back negative, he is concerned that the antigliadin antibodies are breaking down the perkinje cells in my cerebellum. He asked me if I would consider going gluten-free regardless. His theory is, even if it isn't related to absorption issues, the antibodies are frying my brain. I said absolutely.

By the way, for all of you who gave me the advice NOT to go gluten-free prior to seeing a GI doc, THANK YOU THANK YOU THANK YOU. When I told him that the OTHER neurologist wanted me to go gluten-free prior to seeing him, his response was -- "I HOPE YOU DIDN'T" -- that would do me no good. You guys are GREAT. Thank you so much -- if I had gone gluten-free, I would have had to wait a REALLY long time to have my biopsy.

My advice -- if you're having eye troubles, find a good opthmalogist -- that may be the quickest way to get to the GI doctor!!!!!!!!!!!!

BLESS YOUR HEART FOR WHAT YOU'RE GOING THRU BUT I'M SO HAPPY FOR YOU THAT THIS DOCTOR SEEMS TO BE ON TOP OF THINGS.

I can't imagine what you're going thru and it makes my problems seem so small.

I wish you the very best on Thurs. and our prayers will be with you. granny

Guest Eloisa
Guest Eloisa
Posted

You know they link ADD & ADHD and Autism to consuming gluten. My neighbor both children have bothe been taken off of gluten because of developmental problems and not developing like other children their age. She had to take them to a special school and they told her that when they do blood tests and these types of children that gluten comes up in their blood like an opiat. As soon as she changed their diets there was a big change in the development.,

tiredofdoctors Enthusiast
tiredofdoctors
Posted
  • Author

That is REALLY interesting. My mom was telling me about when I was young -- I had diarrhea ALL the time, but they thought it was because of all the antibiotics I took. She said that they put me on a diet of jello, bananas, baked boneless, skinless chicken breast and rice for three months in order to get my GI tract "calmed down" -- Celiac diet, or what????

I was also the "undiagnosed" ADHD -- I either fidgeted or daydreamed, but was smart enough to make good grades. My parents did say, though, that I ate my dinner while tap dancing!

Do you know of any articles I can pull with this info -- my sister (and now her two kids) have ADHD, as well (mine, too) -- and I would love to be able to give her something tangible to read.

I think it's amazing how so many things are interconnected.

VydorScope Proficient
VydorScope
Posted

I would be very carefull of that link. I have ADHD too, and I have seen just about every thing out there be blamed for causing it. Everything from food dyes, to falling as a kid, to seasonal allergies, to the price of tea in China. The real answer is they have no earthly clue why stuff like Autism, ADHD, BiPolar, etc happen in some ppl, and every new doc on the block looking to make a name for him self makes up some new connection based on tiny samples. Add to that the number of ppl taht are mis-dx/d with <any given condition> (so they seemliy get better from unrelated cures) and presto! A new answer to the worlds problems! News at 11, everyday!

Sorry but it just ticks me off that all these doctors do not knwothe the phrase "I do not know" and feel they ahve to make crap up to get you to trust them. BAH.

Guest nini
Guest nini
Posted

Vincent, there HAVE been some very sound medical studies done that have DEFINITIVELY linked ADD/ADHD and Autism to gluten intolerance. I don't have time to look them up right now, got to get ready for work. True Gluten Intolerance may not CAUSE these problems, but it most definitely aggravates them and makes them worse.

VydorScope Proficient
VydorScope
Posted
Vincent, there HAVE been some very sound medical studies done that have DEFINITIVELY linked ADD/ADHD and Autism to gluten intolerance. I don't have time to look them up right now, got to get ready for work. True Gluten Intolerance may not CAUSE these problems, but it most definitely aggravates them and makes them worse.

Nini,

I will remain skeptical, let me give you one example... The symptons of Anemia are very simular to ADD/ADHD, and we know that celiac disease can cause Anemia due the inablity to absorb iron because of the damage to the small intestin. So you treat celiac disease, which cures the Anemia...and POOF the ADHD goes away! Wow you just cured AD/HD! News at 11! :D :D

Real ADHD/ADD is cause by an under active frontal lobe of the brain, cuased by understimulation form the neurotransmitters. Thats an over simplication, but this is a celiac disease board, not ADD board so I am going super nut shell. This condtion shows up in brainscans, and is treated by (until recently) stimumlants that increase the stimulation of the frontal lobe. There recently was released a non-stimulant treatment for ADHD called Strata (spelling unknown to me) but its to new, so I do not have a bunch of info on how it works yet. There have been MANY MANY diets that have come out that sposedly treat ADD/ADHD, and they all only seem to work in some cases pointing more to mis-diagnoses of ADHD then a cure. Believe me, I have talked to 100's (literely) of ppl with ADD/ADHD, many of which have tried the various diet optoins, and while Im not a doctor of any kind, I can tell you that overall dietary treatments seem to be a complete failure. I used to run a support group for ADHD/ADD parents and have seen more cases and treatments options for it then most doctors have.

So while there may be links betweens symptons SIMULAR to ADD/ADHD and celiac disease (because of malnutrition), my experence tells me that real ADD/ADHD is not at all connected to diet.

That being said, if you have celiac disease and ADHD/ADD, by all means still go gluten-free. :D :D Who knows maybe you never had ADD/ADHD in the first place and it will go away when go gluten-free.

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tiredofdoctors Enthusiast
tiredofdoctors
Posted
  • Author

I am totally in the dark with regard to the links of celiac disease and ADHD.

I do know, however, that Vincent's information with regard to the need for neurostimulants is correct. If found early enough and treated, children with ADHD have a chance to have their reticular activating system (the portion of the brain which affects ADHD) jump-started, often reducing the need for medication until eventually it is not necessary. The information I have received with regard to non-diagnosed children ("Adult ADD") is that, unfortunately, the brain has become much less pliable and the long-term prognosis for discontinuing medication without the symptoms returning is poor. The drug Strattera is a non-stimulant medication which is currently being used by both adults and children. I have older children, and both have tried this drug. Neither responded well -- they continued with poor concentration ability, inability to finish tasks, etc. I will take the caveat into consideration with regard to the linking of disease processes to each other -- good point!

(Just adding my two cents)

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