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

Fda Warning For Adhd Drugs
0

51 posts in this topic

I found this article just now, and thought it was important enough for everybody to read.

Sympatico/MSN health news

Here's an excerpt:

Health Canada strengthens heart-related warnings for all ADHD drugs

26/05/2006 2:30:00 PM

Printer-friendly page

TORONTO (CP) - Health Canada has revised warning labels for widely prescribed drugs used to treat attention deficit hyperactivity disorder (ADHD) because of rare but potentially deadly side-effects in patients with certain underlying conditions.

Canadians should not take Ritalin, Adderall or any other ADHD drug if they have high blood pressure, heart disease or heart abnormalities, hardening of the arteries or an overactive thyroid, the federal department warned Friday.

All ADHD drugs stimulate the heart and blood vessels. Their effects are usually mild or moderate, but in rare cases, the stimulation may cause cardiac arrests, strokes or sudden death.

Ritalin and similar stimulant drugs for ADHD came under intense scrutiny following reports of 25 sudden deaths among U.S. children taking the medications. Cases of heart attack, stroke and psychosis were also reported among children and adults on the popular drugs.

Up to five per cent of Canadian children are believed to have ADHD, a neurobiological disorder with a strong genetic component that is marked by poor attention, impulsivity and hyperactivity. More than two million prescriptions for ADHD drugs were written in Canada last year.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Hate to break it to you by HEALTH-CANADA is not the FDA :)

"All ADHD drugs stimulate the heart and blood vessels. Their effects are usually mild or moderate, but in rare cases, the stimulation may cause cardiac arrests, strokes or sudden death."

Not true any more. Theres a new one out thats is not a stimulant.

As for the rest of the article, nothing new in it . MOST (again NOT all) ADHD meds are stimulants, you do not give stimulants to ppl with heart conditions.

Sorry I dont put much stock in scare stories like that. 25 childern dead, out of massive numbers that have safly taken the meds for many DECADES? Heh, thats a darn good record compared to alot of meds.

ADHD meds are not for everyone, heck many ppl with ADHD merely need to fix thier diet, cut out food additives, or several other causes. BUT there are some people with an actual biochemical imbalance that can only be corrected through PROPER used of therapy PLUS meds. I know ppl on this site are very anti meds/docs, but that is the facts. Brainscans, and etc prove it.

0

Share this post


Link to post
Share on other sites

Vincent, if you would actually READ the article, you would find that Health Canada is issuing this warning because the FDA has required the makers of these drugs to put the warning on the labels now.

Also, if you would have followed the link, you would also have found a whole list of drugs, other than Ritalin, that is a problem as well, and will be required to carry the same warning.

And as for ONLY 25 dead children (who died of HEART ATTACKS, no less, how many kids usually die of heart attacks?), if it was YOUR kid, you wouldn't think it was still pretty safe. It also says not to take Ritalin (or any of the other drugs for ADHD) if you regularly participate in strenuous activity. Heck, I really HOPE that most children do a lot of running around, climbing, jumping and the like, meaning, none of the normal, active kids should be taking it, only the couch potatoes are fairly safe.

For that matter, there have been NO long-term studies on the effects of Ritalin (or similar drugs) done. And the ones that have been done (which aren't really long-term enough) have shown that these drugs shrink the brain and cause loss of IQ.

Anyway, so you won't have to bother following the link, here's the full list of drugs listed.

-Adderall XR (mixed salts amphetamine extended-release)

-Attenade (dextromethylphenidate - approved in Canada, but not yet marketed)

-Biphentin (methylphenidate controlled release - approved, but not yet marketed)

-Concerta (methylphenidate extended release)

-Dexedrine (dextroamphetamine)

-Ritalin (methylphenidate)

-Ritalin SR (methylphenidate extended release)

-Strattera (atomoxetine)

0

Share this post


Link to post
Share on other sites

Im not gonna argue this with you Urlsa, I might as well say celiac disease is all in your head an you should just get over it. Its the same thing your saying to me.

Yes I read the article and YES there is non-stimulant med out for ADHD.

The simple fact is, I know what happens to untreated geninue ADHD. Its a CRUEL CRUEL thing to deny them any hope like that. Ppl like you would condone them to a live of missery, suffering and early death just becuase you dont understand. BAH i better walk away. Articles like that KILL more ppl then 25, EVERY FREAKING YEAR.

0

Share this post


Link to post
Share on other sites

Vincent, what have I done to you to be attacked? I just posted an article, that I thought was of interest to people here. Especially because too many kids will be labelled ADHD with problems caused by celiac disease. It wasn't a personal attack on anybody, but information to read or not read, at your leisure.

I wasn't condemning anybody. I believe in informed decisions, and since in my research (medical research is a hobby of mine) I come across some interesting articles, I like to share the information with people.

You can't compare celiac disease and ADHD, as ADHD is NOT a disease, and cannot be proven with ANY subjective testing. Also, did I miss something? In all the many years I have been doing research on ADD and ADHD I've never come across a single instance of somebody dying from untreated ADHD. Of course, that doesn't hold true when you throw drugs at the problem. Drugs which won't cure anything, but have terrible side effects.

In my opinion, almost everybody with ADHD has intolerances that cause it. It can be gluten, dairy or anything else the person is intolerant to. Sugar has been indicated in many studies, as well as artificial flavours and colourings.

Also, many people with Asperger syndrome get misdiagnosed with ADD (usually without the H). NO drug will cure autism, just mask the problems (maybe).

I've found that since I've been on my crazy diet, my ADD is an awful lot better (you will usually never find anybody with Tourette Syndrome and/or Asperger syndrome who doesn't have ADD symptoms as well).

0

Share this post


Link to post
Share on other sites




Ursla,

This topic angers the heck out of me, and prehaps I should be used to the backhanded slaps that the ppl that suffer from nuerlogical disorder constantly get. First of ADHD is, as I stated, provable in brain scans. That study came out in the mid 90's. Frankly you dont need them to see real ADHD though, its apperent in the untreated cases as time goes on. Second off untreated ADHD is statisclty shown to cause premature death and destruction of lives, and thats the lucky group. I ran a large community of ppl that deal with real ADHD (and bipolar, and autism, and etc), and I have personal met ppl first hand that did not get proper treatment and seen what happens in those cases. With holding the only effective treament (in some cases, not all!) is cruel.

For example, I know one young woman with bipolar and ADHD. Instead of getting proper treatment she was beaten, and raped by her father who likely had the same issues, untreated. Her local hypicrictal sorry excuse for a church tried to cast the demon out of her instead of step in and help. State and local officals offered no help ether, cause after all ADHD/etc is not real. Makes me sick to think of her story. Thats the cleaned up version, and unforntintily I know many more like it. Far too many.

Chemotherapy is very dangerous, and cuses alot of damage, but we do it, why? Cuase its the best wepaon we have against Cancer. Or what about open heart surgry? Should we stop that to cause there are risks? Athetisa is very dangerous, so prehaps surgery would be better with out it.

Take ANY DRUG has risks, and the strong more powerful drugs carry more risk.

The problem is ADHD- like symtons can be cause by Anemia, allergies to food additives, and much more. Treating THOSE cases with heavey stimulants (or the new NONstimulant treatment) is foolish, and dangerous. It is THOSE cases that you read about, and and those cases that damage the cause for the true cases.

Not every hyper child in the world needs drugs, most probaly just need an constructive outlet for thier enery, some need a diet change, and yes SOME need real medical help thats a combination of therpy (also called behavior modification) to teach them to cope and drugs. Many will learn to cope well enough to stop the drugs, but some will NEVER be able to cope with out the drugs becuase the biochemical inblance is too great.

This forum over all is HOSTILE to drugs, the medical indusrty, and often ppl with neurlogical issues who depend on those drugs. I am one of the very very few here that make a stand to defend them. Time and time gain the bashing and attacks fly on this topic. Thoughles, cold hearted ppl going on about how we are killing our kids by giving them the ONLY TREATMENT WE HAVE PRESENTLY.

They problem is ppl will quote your post and and the article and tell everyone they are evil for treating thier childern usig it as the newest round of "proof"

Asprin has risks, ppl die from overdoses of Iron supliments, run the list you can pick and drug or food and used improperly can be very dangerous. The PROPER use of stimulants (+ therapy, never alone!) has been extremly effective in treating this disorder for MANY DECADES.

Im awfull sick about how ppl treat the disabled community.

EDIT: I forget ot mention I personaly think, from my personal experenc, that ADHD is a form of autsim. And I am sorry to get flying off on you Ursla.. this topic just hits very close to my heart and I feel like I am the lone voice crying out here on this board in thier defense...

Edited by VydorScope
0

Share this post


Link to post
Share on other sites

Ursula - Vincent:

I know first hand that these drugs for treating ADHD most importantly need to be monitored. I have seen it cause some critical situations. I am not saying that the drugs are bad and there truely is a need for some, but the monitoring is very essential. Especially in young people. A young person with many issues, Adderall, or other similar meds can be a potentially deadly combination.

If any of you have a loved on on these drugs, please be attentive to them.

Lisa

0

Share this post


Link to post
Share on other sites
Ursula - Vincent:

I know first hand that these drugs for treating ADHA most importantly need to be monitored. I have seen it cause some critical situations. I am not saying that the drugs are bad and there truely is a need for some, but the monitoring is very essential. Especially in young people. A young person with many issues, Adderall, or other similar meds can be a potentially deadly combination.

If any of you have a loved on on these drugs, please be attentive to them.

Lisa

LOTS of drugs in the wrong combo can kill. ALL drugs need to be carefull monitored and checked. My nieghbor has diabates and takes varius drugs becasue of it. Improper comdinations have cuase serious complications... You can choose any serious disorder/disease and say the same.

So why do we single out just these drugs?

0

Share this post


Link to post
Share on other sites

Vincent, guess what, I am PART of the disabled community! And yes, I have been treated badly and abused my whole life because of Asperger Syndrome and Tourette Syndrome.

For example, I know one young woman with bipolar and ADHD. Instead of getting proper treatment she was beaten, and raped by her father who likely had the same issues, untreated. Her local hypicrictal sorry excuse for a church tried to cast the demon out of her instead of step in and help. State and local officals offered no help ether, cause after all ADHD/etc is not real. Makes me sick to think of her story. Thats the cleaned up version, and unforntintily I know many more like it. Far too many.

This is unfortunately not an uncommon scenario, and I agree, it is an atrocity, it makes me sick to think of it. My sorry excuse of a husband has suggested I need to have demons cast out (because AS is, in his opinion, a mental illness, and ALL mental illnesses, so he says, are caused by demons). Religious fanatics like him are a huge problem. But as you and I are both still Christians, we know that those people are wrong, and are using Jesus' name for evil.

Nowhere did I say that people shouldn't get the proper help for their problems. Actually, as I said, quite a few people with AS are misdiagnosed with ADD. And people with autism (which includes AS) definitely show a difference in their brains on brain scans.

Statistics can be used to show anything you want to show. They don't mean much.

Chemotherapy has never been proven to really heal anything, but causes a great deal of damage. Even if it manages to halt one type of cancer (while destroying the immune system), it usually causes another type down the road (statistics only show if they survived for five years, not if after six years they develop another type of cancer they die from in the seventh year). The statistics will still show they got healed.

I am NOT hostile to drugs that are really needed. They safe lives. I don't like drug treatment for illnesses that can be helped naturally. I wouldn't tell Rachel_24 that she should stop taking her thyroid medication, because her thyroid is not functioning any more, and not taking her drug would likely kill her. I wouldn't tell somebody with an asthma attack to not use their puffer, because they might die (actually, I use one when I have to myself).

But I PREFER the cause of the problem be found and corrected, rather than just treating symptoms. And for the most part, that's all our doctors have learned to do, and that's all they know.

Yes, anesthesia IS very dangerous, that's why everybody should make sure the surgery they're getting is really necessary. Many surgeries these days are completely unnecessary. The risk is worth it when really necessary.

Did I say anybody who gives kids those drugs is evil? I didn't say any such a thing. But when you go to any school and see them hand out those drugs to a lineup of kids at lunch time like candy, it makes me upset. Because there is no way that all those kids really need them. Most of them eat loads of sugar each day, and other things that will affect their brains and make them hyper.

I just read your edit, and I forgive you for flying off the handle on me. And as I said, there are cases of people 'diagnosed' with ADHD who really are autistic, and they need help. Still, I am not sure about medicating them. I could really have used some help on a lot of things as a kid, like how to make friends, how to behave in a socially acceptable way etc. AND I would have, more than anything else, benefitted from a gluten-free diet. Which wouldn't have 'cured' me of AS, but would have been a great help.

0

Share this post


Link to post
Share on other sites
Vincent, guess what, I am PART of the disabled community! And yes, I have been treated badly and abused my whole life because of Asperger Syndrome and Tourette Syndrome.

So am I. I have mentioned here before, I am daiganosed seperatly by multiple indepentend docs as haveing ADHD and few other nice lables. I have a heart condition, so the stimulant drugs are out for me (trading one risk for another there...), but I am fortunite enough to not *need* the drugs, I have applied many means of behavior modifications that help, but as my wife could tell you, not cure. I was not abused phyisicly ever to best of my reckolection, but I know how the schools/etc treated me, and I will not let anyone treat my son like that (no signs of any simular propblem in him since getting him gluten-free, thankfully!!!)

Dietary changes did not help me, nor that young woman I mentioned, BUT I have seem them help many, AND have seen reports of them "cureing" uncurable condtions like autism. I think there is alot of our problems as a society's health that are cused by all this junk added to our foods, but thats a different soap box to get on! :D

But I PREFER the cause of the problem be found and corrected, rather than just treating symptoms.

Whole hearlty 100% agree. Causes need to be found as soon as possible and treated directly. As I mention above lots of things can cuase ADHD like symptons, including celiac disease.

But when you go to any school and see them hand out those drugs to a lineup of kids at lunch time like candy, it makes me upset. Because there is no way that all those kids really need them. Most of them eat loads of sugar each day, and other things that will affect their brains and make them hyper.

I agree that is a ver sad state off afrfiars( in USA at least) where if you have any problem (To fat ? To skiny? To happy? To sad? Cant sleep? cant stay awake?) the anwer is TAKE A PILL!

Still, I am not sure about medicating them. I could really have used some help on a lot of things as a kid, like how to make friends, how to behave in a socially acceptable way etc. AND I would have, more than anything else, benefitted from a gluten-free diet. Which wouldn't have 'cured' me of AS, but would have been a great help.

Meds in most cases bridge the gap only. What I mean by that is you start the subject (adult or child) on meds AND put them in therapy and behavioral training (sounds so evil, but thats what it is). The combination of the two will often get far better results. Then under proper supervision you ween the child/adult of the drugs, and in many cases they can adjust fine, but not all cases. The goal is to get the person free of the drugs (or SHOULD be), but in some cases it can not be done. I know too many of those cases where ppl tried to force it with bad outcomes.

0

Share this post


Link to post
Share on other sites

Phew, I am glad we can manage to really, basically agree after all. I'd have hated to have made an enemy here, because I like and respect you. I know I can come on pretty strong at times, as I tend to get very passionate on certain things as well. I am sorry I offended you at the start of this thread, it certainly wasn't intentional.

0

Share this post


Link to post
Share on other sites

just jumping in here-----i have had counciling and i have taken too many different anti-depressants to remember them all------without getting a whole lot of help from either. finally, about 6 weeks ago, after doing some research, and seeing a psychiatrist, i have been told that i score pretty high for ADD. my 23 yr old, who has been sucicidal and somethimes almost non-functioning, has been told by the psychiatrist that he is the "poster child" for ADD. as the light is coming on, i am suddenly realizing that my 17 yr old probably has ADD also. i could go on with more family stories----but what i am getting at is that there seems to be a definite problem in our family (extended family, also). right now i am taking 2 different antidepressants without a tremendous amount of help from them. when i was able to get away for awhile, i realized how much more relaxed i was and how NOT depressed i was.

i guess it took 43 years to figure it out because i am ADD and not ADHD. i was pretty smart and i played sports----that must have been how i compensated.

i REALLY would like to give the stimulants a try to see if they might work better than the anti-depressants------i don't have any of the medical problems that could make the risks higher.

my forgetfulness, agitation, and lack of organization is not good at all for my family and my marriage-----i can't help but wonder if it has contributed to my daughter's eating disorder.

i really feel that there are different, more natural things that could possibly help my ADD and my fibromyalgia (i've even tried a few), but i don't feel like i have the time right now to concentrate on them-----i'm kind of feeling like, if a pill will get me through this for now----send it my way.

i hope this wasn't totally pointless ramblings----i have a tendency to do that.

0

Share this post


Link to post
Share on other sites

Christine, have you eliminated all possibility of other intolerances besides gluten? Have you ever been tested for Asperger Syndrome? Before trying any stimulants, you REALLY should rule out any known causes of those problems first. Meds are only the last resort. Also, maybe you might want to try counselling.

IF you have AS (which is possible, most adults have never been diagnosed, and doctors only screen kids, as if they never grow up), antidepressants won't work, as they generally don't do much good for autism. Simply because our depression is caused by frustration, low stress tolerance and being told to "get our act together and grow up" and similar 'helpful' advice. You might want to try these tests to see if it is at all possible that you have AS (these are developed and put on the web for free for pre-screening by the leading AS specialists in the world, and are not quack tests).

Autism Quotient test (AQ)

Empathizing and Systemizing Quotient (EQ and SQ)

My results were, AQ=48, EQ=21, SQ=111, which is pretty extreme, obviously (I 'outscore' even most people with AS).

Anyway, try these just for fun, and see how you score.

0

Share this post


Link to post
Share on other sites

Mine were 30, 35 and 52, respectively.

0

Share this post


Link to post
Share on other sites
Mine were 30, 35 and 52, respectively.

Hmm 37,9,122

LOL guess that means Im an uncaring pscho :)

i REALLY would like to give the stimulants a try to see if they might work better than the anti-depressants------i don't have any of the medical problems that could make the risks higher.

Serious question for you, and think hard on this... How does cafine effect you?

0

Share this post


Link to post
Share on other sites

AQ= 27

EQ= 29

SQ= 136

that's weird, what does that say about me?

when I was taking the SQ test, I kept thinking "who doesn't do that?"

:P

0

Share this post


Link to post
Share on other sites

AQ - 17

EQ - 42

SQ - 63

My EQ/SQ numbers more closely matched male rather than female - hum...wonder what that is all about.

0

Share this post


Link to post
Share on other sites
LOL guess that means Im an uncaring pscho :)

From what I can tell, you could not be further from the truth! :D

0

Share this post


Link to post
Share on other sites

Yikes, Vincent, are you sure you don't have AS? You may want to find an Asperger Specialist, who deals with adults (and there aren't many, unfortunately), to be tested. And no, you obviously aren't an uncaring psycho (and neither am I), we're just different and don't fit the norm (which appears to be a crime these days it almost seems).

Kabowman, you are just a little more into technical stuff than many women, but with your numbers, you are excluded from the 'exclusive' AS club, sorry! :P

Smunkeemom, you obviously are a LOT into systemizing, but again, with your other two numbers, not likely AS (or maybe just a touch).

And Jerseyangel, you look like a normal introvert to me.

There, I've done my job as 'psychologist' now :ph34r: , but it's probably pretty accurate. I have done years of research on AS to find out about who I am, rather than what people claim I am. And those numbers, while they won't diagnose anybody, are a good indication of whether it is possible for people to have AS (and to see if anybody should pursue further testing).

0

Share this post


Link to post
Share on other sites

"Normal introvert"--sounds about right. I'll take it :D

0

Share this post


Link to post
Share on other sites

I'm awesome :P

AQ - 9

EQ - 53

SQ - 52

0

Share this post


Link to post
Share on other sites
Yikes, Vincent, are you sure you don't have AS? You may want to find an Asperger Specialist, who deals with adults (and there aren't many, unfortunately), to be tested. And no, you obviously aren't an uncaring psycho (and neither am I), we're just different and don't fit the norm (which appears to be a crime these days it almost seems).

Well I have had lots of lables, but AS has not been one of them. I pretty much assume some form of Autism but since my last DX'd of ADHD/etc I not been for futher testing. One I notice about AS is...

However, children with AS do not have delays in the area of communication and language. In fact, to be diagnosed with Asperger, a child must have had normal language development

To this day I am way behind in written lang. I tested a 4th grade level recently. So probably not. Verbal I am okay with, and thanks to programs like Word, I get by fine in the corporate world with written and I am far from the complete and total helpless failure that many said I would be. :)

Bit of trivia for you... under the ADA its is illegal to require me to spell words correctly :lol::lol:

0

Share this post


Link to post
Share on other sites
I'm awesome :P

AQ - 9

EQ - 53

SQ - 52

Well, here now we have a perfectly rounded, 100% normal person (whatever normal means). Amazing! :D I think an AQ of 9 makes you a VERY social person (the opposite of me).

0

Share this post


Link to post
Share on other sites

Congrats Chelsea--you're the normal one :lol:

0

Share this post


Link to post
Share on other sites
I'm awesome :P

AQ - 9

EQ - 53

SQ - 52

Well, here now we have a perfectly rounded, 100% normal person (whatever normal means). Amazing! :D I think an AQ of 9 makes you a VERY social person (the opposite of me).

Congrats Chelsea--you're the normal one :lol:

Normal? Man... thats a concept I just dont understand... so hard to get my head around... whats it like?????

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
      104,096
    • Total Posts
      920,334
  • Topics

  • Posts

    • Awok, Welcome to the forum.  Have you considered trace gluten?  Here is a study on the topic: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/pdf/1471-230X-13-40.pdf It could explain why you felt good for a while.  I personally was glutened badly last summer.  I have no idea what got me.  I suspect either a prescription medication or one gluten free product (not certified).  I ended up on a whole foods diet and avoided even certified processed gluten-free foods including grains until I was healed (three to six months).  
    • I've had a range of symptoms in the last 2 months and in the past few weeks I have discovered that my TTG abs (igA) levels were 41 (my igA tests were fine). The doctor said that he is pretty much certain that it is celiac disease and I am awaiting an endoscopy to confirm it.  Before I found out that my TTG abs (igA) levels were high, I noticed that my body was reacting really badly to dairy products. I went on an elimination diet and stopped all gluten and dairy products and felt much better. I carried this on after my results and thought that I must have developed a dairy intolerance due to my celiac. 2 days ago I accidentally consumed a glass of wine which I thought was dairy free but it contained Milk. I have not had any gluten.  I am currently in the middle of a flare up. All of a sudden rashes have started to appear on my hands and my anxiety has returned (usually not a anxious person). No diarhhoea, vomiting or digestive issues. I am currently suffering from muscle twitching, rashes predominantly on hands and feet, brain fog, pins and needles/numbness on hands, feet and arms. However, I have been tested for milk allergy and this came back negative. Is it possible that it is dairy that is causing my symptoms/autoimmune reaction and could this be a reason for elevetated TTG abs (igA) levels. Or has the doctor only picked up my celiac and missing something else. If it was dairy intolerance then I would have digestive issues but I don't seem to have any. Could it be the casein protein?  Anyone been in a similar situation or can anyone provide some insight? 
    • Hello Everyone, This is my first post here and I am writing to seek help from experienced people here. I have been suffering for over 4 years now and still no where close to having a solution/ satisfactory diagnosis of my problem. My problems started in Mar 2012 with sudden diarrhea which would not go away for days. At first, I was given general antibiotics medication which would help bring down the frequency for some days and then it would come back. Since then it has been going on. I am giving a time line and the series of tests and procedures I have gone through. Would like opinion from experienced and experts here. I can send the scans and reports if required. Would really appreciate the help. Male, Indian origin Mar 2012 - onset of symptoms - multiple bouts diarrhea - spaced 3-4 weeks, bloating, weight loss (to start with I was 74 Kgs), GP managed with antibitocs and loperamide for months Dec 2012 - consulted a GI doc towards end of 2012, Colonoscopy done - conclusion was "IBS" - was advised to manage stress. use Rifaximin and immodium Jan 2013 - Aug 2013 kept moderately fine for 3-4 months ..again started getting frequent diarrhea + weight loss (was around 70 Kgs) Oct 2013 - Consulted another doc, MD - stool and blood test - Ecoli and high Eosinophil Count, medication done for 5-6 months, montinored eosinophil from nov - Mar: always kept high.. came down but then again shot up in a month Mar 2014 - Consulted another GI expert - Endoscopy and duodenal biopsy done - H Pylori and Unremarkable Villious pattern, (weight 68 Kgs) - On and Off diarrhea continued. Given: Ivermectin July 2014 - again same doc - Blood test done: High Eosinophil count,  Colonoscopy and Ileum biopsy - preserved villous architecture, features of eosinophilic enteritis; Endoscopy  + duodenal biospy again - numerous H pylori bacteria, Preserved villous crypt ratio, features of eosinophilic enteritis > conclusion: I have eosinophilic enteritis. Started on Prednisolone (steroids) Aug 2014 - 3-4 days of severe diarrhea> weight came down to 65 Kgs. Hospitalised for 3 days - continued on Prednisolonerios Sep 2014 - After 10 days only again a serious bout of diarrhea - hospitalized again - put on IV fluid for 8 days - weight 59 Kgs. Colonoscopy + biopsy done: features of superimposed c. difficile colitis, non-specific mild colitis > c. difficle test came out negative. CT Enterolysis +Scan done: mesenteric lymphadenopathy > nothing wrong acc to docs. IgA deficiency found - diagnosed Celiac - advised for Gluten free diet.   Sep 14 - May 16: continued gluten-free diet, gained weight upto 63 Kg in Jan 16, but then started losing again and came to 59 Kgs in May. No signficant diarrhea. Minor issues. June 16 onwards: Again diarrhea started, still on gluten-free diet, weight lost - 54 Kgs now. hospitalised again under same GI doc - blood test - eosinophil high, CT Enterolysis done: Showing mucosal thickening in Jejunum and Ileum; Enteroscopy (going in jejunum) + jejunal biopsy - jejunal erosions + villous blunting, marked atrophic with V:C ratio of 0.5: 1 to 0:1. HttG blood test done - Came out negative> Conclusion : No gluten exposure (how?) + Refractory Celiac disease. June - July - have been suffering from continuous diarrhea (goes off for 5-6 days and comes back, bloating, trappings in abdomen - waiting for I don't know what. On Rifaximin + Ivermectin + Codeine Sulphate (for diarrhea) I am very depressed and have no clarity on what's going on. If it is celiac, why am I not doing better on gluten-free diet. If the villous damage is still there in small intestine, then why did I kept fine for Sep - May period? HTTG - negative now but was NOT taken in Sep when I was first diagnosed with celiac. Can we trust negative HTTG now and conclude that it has come down? I am 20 kgs down from my ideal weight and still going down. Have no clue what NOT to eat to stop this. Why is eosinophil always high. Can any of you expert help me to put my case to docs in other countries? With lots of hope, Alok          
    • So, I know I'm obsessing but...... University of Chicago Celiac Disease Center website says any total IgA result over 20 won't affect the celiac test.   If this is so,  I'm still confused as to what a weak positive ttg iga means even though her result was barely in this category.  Why bother having a weak positive anyway?   I just don't get it and our doc is on vacation so I won't know what he'll recommend for another week.  I'll be finding out this week if we can see a GI without a referral. Our lyme doc (she's had lyme, may still have it, like I said it's a long story) is having her do an IgG wheat test but I don't think that has any bearing on celiac does it?    
    • Hi!  I've had good luck at the Minnesota state fair because most food booths are only doing one thing so there is no cross-contamination. For example: french fries or chocolate covered bacon or Indian kebabs.   But I live in California and I am heading to the state fair today! Does anybody have any great food suggestions that are definitely gluten-free there? Thanks, Celiac C.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,131
    • Most Online
      1,763

    Newest Member
    Feralgurl
    Joined