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

Does Super Sensitivity Exist?
0

54 posts in this topic

As a 90 page document, I have found the FDA publication, Health Hazard Assessment for Gluten Exposure in Individuals with Celiac Disease: Determination of Tolerable Daily Intake Levels and Levels of Concern for Gluten by the Office of Food Safety Center of Food Safety and Applied Nutrition Food and Drug Administration in May 2011, to be a wee bit overwhelming. However, it seems to be packed full of good information for those of us trying to better understand the concerns that gluten exposure may present to those with celiac disease.

The full document can be found here:

http://www.fda.gov/downloads/Food/ScienceResearch/ResearchAreas/RiskAssessmentSafetyAssessment/UCM264152.pdf

I will highlight some of the stuff that has interested me, and I am curious what things may have stood out to others with regards to the existence of super sensitivity.

On page 12, it summarizes this FDA Health Hazard Assessment of May 2011 as,

2

Share this post


Link to post
Share on other sites


Ads by Google:

Even the Fasano study does not draw the conclusion that 10 mg/day is safe. He says it's a "grey area" when you read the paper. The government has taken the next paragraph out of context. This is a situation just like GMO foods, where corporate interests outweigh the interest of the taxpayer.

I haven't seen a medical study on super-sensitivity other than the case reports. I doubt we will ever see one for a number of reasons. You have to find super-sensitives who have healed well to challenge. Then, let's say you want to challenge with 2.5 mg/day, 5 ppm by Fasano's math. Let's be really generous and say the relapses will be 1 in 50. (Not symptomatic folks, true relapses to villous damage.) That means you have to low-dose 500 people to find 10 relapses, some of whom will probably drop out. Even worse, you have to find 500 people who aren't already eating 2.5 mg/day, which is well-nigh impossible given that so-called gluten-free foods aren't really gluten-free. The study would be prohibitively expensive and would take years to recruit your subjects. To compound the issues, super-sensitives have a lot of acute symptoms from gluten so they're going to tend to drop out of challenge studies. You can't keep them in - paying enough that you will tolerate feeling really ill is coercion and is illegal.

You could try putting people on a "gluten-free" diet who feel OK but still have a little atrophy on a diet of naturally gluten-free foods, but the compliance issues would be a nightmare. Many celiacs feel OK with a little villous atrophy and while it's not an ideal situation, people won't do something like a ridiculously inconvenient diet if they don't feel like they need it. They will cheat and lie to the doctor doing the study. Nobody sane would take it on. You can't do the study on celiacs who don't feel OK because you can't confirm that the issue isn't another allergy, intolerance, or autoimmune disease.

Does it exist? I'm sure this thread will be full of replies that it does. I'm equally sure that some of the people who think they are super-sensitive are reacting to other foods, simply because that's what happened to me. You don't necessary react to a food to which you are intolerant every time you eat it and it can be very confusing to unravel.

1

Share this post


Link to post
Share on other sites

I haven't seen a medical study on super-sensitivity other than the case reports.

Two of those are studies on small amounts of gluten and not case reports: 1.5 mg/day (Chartrand) and 4 mg/day (Ciclitira). I don't know if you consider those amounts to be small enough to show super sensitivity or not. They seem to fall under certification levels.

Your points about targeting super sensitives in particular for a study are valid.

0

Share this post


Link to post
Share on other sites

Two of those are studies on small amounts of gluten and not case reports: 1.5 mg/day (Chartrand) and 4 mg/day (Ciclitira). I don't know if you consider those amounts to be small enough to show super sensitivity or not. They seem to fall under certification levels.

Your points about targeting super sensitives in particular for a study are valid.

I just don 't have the time to read all that today as its the last few build days for First robotics and i have to help. so I'm going to ask one who has read it. How did they know that the person only got 1.5 mg? Did they have to stay in a controlled environment? Maybe something they assumed was gluten-free had errant crumbs or something?

This isn't meant to argue just curious how they would do that. We have a place here that does drug studies and they lock people in for weeks if they have to be certain of what they eat or how much they exercise. I would think something microscopic but everywhere would be really hard to regulate. I wish gluten glowed under a blue light or something. :)

0

Share this post


Link to post
Share on other sites

I went and read the Chartrand study. They gave people wheat starch that was 0.75 mg gliadin/100 g (15 ppm gluten) and they estimate people were eating about 100g/day, four slices of the bread they made with it. They didn't do any dietary manipulations to try to control people's diets other than adding the wheat starch, and the study was not blinded in any respect. They didn't biopsy but nobody developed anti-EMA antibodies during the study. Two people of 17 had DH outbreaks, which they do consider objective evidence that autoimmunity was triggered. The third person with DH was OK. By the end of 10 months, 15 out of 17 subjects had dropped out, refusing to continue eating the wheat starch because it was making them ill and the study, which was supposed to go a year, was terminated early.

The study is interesting because they also had a group of 14 people who were already eating wheat starch foods before and tolerated the starch perfectly well.

Is not tolerating bread with ~15 ppm super-sensitivity? It seems like so much gluten to me. :unsure: I think I would be sick eating that every day and I don't consider myself super-sensitive.

This is pretty compelling evidence that wheat starch is a problem for a lot of celiacs (not surprising), but can we safely generalize to CC of tapioca starch or rice flour breads? Probably?

1

Share this post


Link to post
Share on other sites




I just don 't have the time to read all that today as its the last few build days for First robotics and i have to help. so I'm going to ask one who has read it. How did they know that the person only got 1.5 mg? Did they have to stay in a controlled environment? Maybe something they assumed was gluten-free had errant crumbs or something?

This isn't meant to argue just curious how they would do that. We have a place here that does drug studies and they lock people in for weeks if they have to be certain of what they eat or how much they exercise. I would think something microscopic but everywhere would be really hard to regulate. I wish gluten glowed under a blue light or something. :)

Sorry, just saw this, I worked yesterday. I don't remember the details and am glad that Skylark replied to you. I need to get to taxes and the FAFSA application.

Hope you enjoyed the robotics, my kids did that too.

0

Share this post


Link to post
Share on other sites

Is not tolerating bread with ~15 ppm super-sensitivity? It seems like so much gluten to me. :unsure: I think I would be sick eating that every day and I don't consider myself super-sensitive.

This is pretty compelling evidence that wheat starch is a problem for a lot of celiacs (not surprising), but can we safely generalize to CC of tapioca starch or rice flour breads? Probably?

This is hard. For one thing we are comparing ppm and mg/day which don't directly translate since it depends on how much you eat of the stuff.

I think that different definitions of super sensitivity also exist so who knows if we even discussing the same thing there.

Perhaps we can agree that a celiac/gluten intolerant having problems with gluten free foods might want to try a diet of unprocessed foods?

0

Share this post


Link to post
Share on other sites

Sorry, just saw this, I worked yesterday. I don't remember the details and am glad that Skylark replied to you. I need to get to taxes and the FAFSA application.

Hope you enjoyed the robotics, my kids did that too.

I figured it would be hard to keep people not in an enclosed environment " gluten safe". This seems to be one of those things that currently is probably impossible to test. Maybe someday they will be able to test differently but there's probably no money in it.

At Robotics, I helped some kids hand sew Velcro onto the bumpers. Since the cloth was already on the bumpers, it was really hard. I got some surgical clamps to pull the needle thru. Hub and son, M, spent most of the day re-organizing all the nuts, bolts, tools, etc they need to take to competition and re- welding the cabinet. Just typical teen- age stuff - lack of planning & dis-organization. :D

0

Share this post


Link to post
Share on other sites

This is hard. For one thing we are comparing ppm and mg/day which don't directly translate since it depends on how much you eat of the stuff.

I think that different definitions of super sensitivity also exist so who knows if we even discussing the same thing there.

Perhaps we can agree that a celiac/gluten intolerant having problems with gluten free foods might want to try a diet of unprocessed foods?

It is hard. They have to get some idea of mg/day in a study to be quantitative but it's a really iffy number.

I think we have people on this forum who react below 1 ppm of gluten in a not-large portion of food. I don't know that any study has addressed that level of sensitivity. It reminds me of the most serious peanut allergies, where someone eating peanuts in the same room can give the allergic person hives.

I totally agree with you about the value of trying a diet of unprocessed foods. I'd exclude milled flour too, on the basis of Tricia Thompson's study that showed all the CC in flours that one might think would be naturally gluten-free like cornmeal and soy flour.

0

Share this post


Link to post
Share on other sites

I think we have people on this forum who react below 1 ppm of gluten in a not-large portion of food. I don't know that any study has addressed that level of sensitivity. It reminds me of the most serious peanut allergies, where someone eating peanuts in the same room can give the allergic person hives.

We have other people on this forum who say that these people actually are reacting to the fat in their food, have other intolerances, or are crazy obsessive.

I totally agree with you about the value of trying a diet of unprocessed foods. I'd exclude milled flour too, on the basis of Tricia Thompson's study that showed all the CC in flours that one might think would be naturally gluten-free like cornmeal and soy flour.

I agree with the milled flour comment. I think that there are some other foods that are commonly cc'ed due to farming processes. I hope to see more research on that topic so that we super sensitives can know what those foods are without having to find out the hard way.

0

Share this post


Link to post
Share on other sites

Perhaps we can agree that a celiac/gluten intolerant having problems with gluten free foods might want to try a diet of unprocessed foods?

Totally agree!

That is the advice I offer to someone who is still having symptoms and is getting frustrated/panicky trying to figure out if it is gluten or other food intolerances.

That is too complicated to sort out when there are multiple ingredients in a product.

I am, in fact, following my own advice right now. :lol: Back to a PLAIN as can be diet. I seem to have issues with food additives and high histamine foods. (post- DX 1 year) I am not sure that I qualify as a super sensitive, but could just still be healing. I DO have a quick onset of neuro symptoms from trace gluten (my "tell"-- so to speak) and I take nearly 8 weeks for all the other nasty symptoms to diminish. That happened just once--when I tasted a "flourless chocolate cake" from an upscale restaurant, It was likely CCed in the bakery where it was made. (I was unaware that it was not made on the premises--they are very good about gluten CC and food allergies) The chef got an earful from me!! It was the ONLY time I trusted a "gluten-free menu" item.

My doctor thinks it's just slow gut healing. (I was DXed late in life and had symptoms for 40 years. )

If only I knew back then what I know now. :rolleyes:

I read the study you guys posted (twice) because I want to understand what super sensitivity MEANS and how it is determined, but I have so many questions about it all. Skylark has helped clear it up some more for me.

0

Share this post


Link to post
Share on other sites

Totally agree!

That is the advice I offer to someone who is still having symptoms and is getting frustrated/panicky trying to figure out if it is gluten or other food intolerances.

That's great. This forum has come a long way.

0

Share this post


Link to post
Share on other sites

That's great. This forum has come a long way.

I think there are a lot more of us "veterans" who suggest to newbies that they try a whole foods, unprocessed diet than may be evident. :)

I wish to qualify that I personally am not against using certified gluten-free products as I have used some myself and I am not convinced the ones some folks say are "not safe" are unsafe for EVERYONE.

I honestly think so much of dealing with celiac is an individual experience.

There is no "one-size fits all."

I always say I "wish I were a NORMAL celiac"--you know, 6 months on the diet--and someone feels great? If only. :rolleyes: It's going to take me years.

1

Share this post


Link to post
Share on other sites

We have other people on this forum who say that these people actually are reacting to the fat in their food, have other intolerances, or are crazy obsessive.

This argument about super-sensitivity exists IMO largely because other celiacs are afraid of it. What is more frightening than realizing that it's within the realm of possibility to react to the loaf of GFCO certified gluten-free bread in your refrigerator that you thought was safe? Or that there are people with celiac disease who cannot consider eating out... ever? It's much easier to tell the person who is threatening your entire, carefully-constructed, gluten-free world that they must be reacting to fat.

I think it's reasonable to remind people that super-sensitivity seems less common than reactions to other foods and food chemicals, and to remember to consider ALL the ingredients in what they ate. I think it's a jerk move to tell someone they are obsessing. Aren't we questioned enough by family, friends, and doctors?

2

Share this post


Link to post
Share on other sites

IH "I always say I "wish I were a NORMAL celiac"--you know, 6 months on the diet--and someone feels great? If only. It's going to take me years."

Ha Ha, yes I have a friend who is one of those. Diagnosed by positive blood and biopsy last year, after feeling tired due to anemia. She had previously been one of those people with boundless energy and enthusiasm. Now feels fine, and only gets a mild stomach ache if she gets zapped. CC doesn't seem to bother her too much.

As for me, well I've been tired and have struggled with various symptoms for 25 years. I have no antibodies to gluten. A doc couldn't find any villous atrophy a couple of years ago after a gluten lite diet. Having been put on the gluten-free diet by a well-meaning rheumatologist, a GI is not likely to find any now either. I got about 70% better within a few weeks of going gluten free, including many of the longstanding problems (which I hadn't previously thought were gluten-induced), and the rest, are still hanging around. And that is by eating mostly unprocessed foods, avoiding dairy and oats, taking enzymes, probiotics and vitamin supplements, not eating out and banning gluten from being cooked in the home. I am not complaining, but it does perhaps go to show how wide the spectrum of symptoms, and their severity is. And I know from reading many of your stories here how tough many of you have had it prior to diagnosis, and how hard you all work to find your way back to good health, in particular those of you who are suffering from super-sensitivity, multiple intolerances or other serious health conditions. It is your posts, current and past, who help me decide day-by-day and week-by-week how to manage my own healing process.

0

Share this post


Link to post
Share on other sites

I am not convinced the ones some folks say are "not safe" are unsafe for EVERYONE.

I hope that I haven't given the impression that I believe that because I don't. Really, most celiacs don't have any symptoms even on a total gluten diet. Those are mainly the ones that haven't been diagnosed.

I hope you heal up fast. It has taken me quite awhile too.

0

Share this post


Link to post
Share on other sites

This argument about super-sensitivity exists IMO largely because other celiacs are afraid of it. What is more frightening than realizing that it's within the realm of possibility to react to the loaf of GFCO certified gluten-free bread in your refrigerator that you thought was safe? Or that there are people with celiac disease who cannot consider eating out... ever? It's much easier to tell the person who is threatening your entire, carefully-constructed, gluten-free world that they must be reacting to fat.

I think it's reasonable to remind people that super-sensitivity seems less common than reactions to other foods and food chemicals, and to remember to consider ALL the ingredients in what they ate. I think it's a jerk move to tell someone they are obsessing. Aren't we questioned enough by family, friends, and doctors?

Maybe some people just have a hard time conceiving that there are some more sensitive than they are. This could be especially so if they were very sick.

Unfortunately, that attitude can be very damaging to someone who is more sensitive. It can convince them not to consider the possibility of super sensitivity. That is what happened to me, and my son and I were sick for many additional months because of it.

This certainly isn't a one size fits all condition.

0

Share this post


Link to post
Share on other sites

I am not complaining, but it does perhaps go to show how wide the spectrum of symptoms, and their severity is. And I know from reading many of your stories here how tough many of you have had it prior to diagnosis, and how hard you all work to find your way back to good health, in particular those of you who are suffering from super-sensitivity, multiple intolerances or other serious health conditions. It is your posts, current and past, who help me decide day-by-day and week-by-week how to manage my own healing process.

Those of us DXed later in life always take longer to heal, from what I have read and understand. And figuring out what ELSE may be going on is a bugger. :rolleyes:

It is so gratifying to hear you say that anything you read on here has helped. It helped me IMMENSELY. In fact, it was while researching my symptoms repeatedly for 3 years, that the links kept coming back to member stories on CELIAC.com. :)

I hope your symptoms continue to improve!

My doctor tells me "Be Patient". I am, I am!!...but it is not easy as I am in terrible pain and I cannot take a thing for it. :(

I think there is a wide spectrum of gluten sensitivity, but I am still learning and reading medical literature before I think I "must be" super sensitive. For all I know, I could have refractory sprue (God forbid) I am not "going there" in my head and neither is my doc!

So, we help each other and trust that in time, we will all get better.

I met a woman in her 70's who is gluten-free for 8 years now and she told me "THIS IS THE BEST I EVER FELT IN MY LIFE! Every year gets better and better! I had no idea what feeling great felt like--I was always feeling lousy--my whole life. I thought that was "normal".

She moves/talks/walks like a 50- year- old. :)

I said to hubs "Great--I'll be a healthy old broad!!" :lol:

Best wishes to you!

1

Share this post


Link to post
Share on other sites

This argument about super-sensitivity exists IMO largely because other celiacs are afraid of it. What is more frightening than realizing that it's within the realm of possibility to react to the loaf of GFCO certified gluten-free bread in your refrigerator that you thought was safe? Or that there are people with celiac disease who cannot consider eating out... ever? It's much easier to tell the person who is threatening your entire, carefully-constructed, gluten-free world that they must be reacting to fat.

I think it's reasonable to remind people that super-sensitivity seems less common than reactions to other foods and food chemicals, and to remember to consider ALL the ingredients in what they ate. I think it's a jerk move to tell someone they are obsessing. Aren't we questioned enough by family, friends, and doctors?

Afraid of super sensitivity? How is that different than coming very close to death from this disease? That is real fear of which I and many others I have met faced. When I reacted to labeled gluten-free foods, I didn't automatically assume that it was from gluten. There are other ingredients in most gluten-free processed foods. It is always the smart route to investigate all possible sources of a reaction.

As far as being easier to tell a person they may be reacting to fat, maybe it is easier because it's extremely common for Celiacs to have trouble digesting fats, even after recovery. It's called pancreatic insufficiency and it's not a subject heavily discussed. Instead, people become overly focused on one thing...gluten contamination. There are many reasons people react to foods, which should remain the focus when someone becomes symptomatic, which you have been good enough to state in your post.

With regards to obsessing....to be perfectly honest, it happens. I don't regard it as a jerk move to state the obvious.

1

Share this post


Link to post
Share on other sites

IH - "My doctor tells me "Be Patient". I am, I am!!...but it is not easy as I am in terrible pain and I cannot take a thing for it."

I am sorry to hear this, particularly as you are so positive and upbeat in your numerous posts here. I think I read elswhere that you lost a lot of muscle when you were ill before diagnosis, and suffer from major nerve pain. I had a similar problem, albeit not as badly as you, about 9-10 years ago after a car accident. I had soft tissue damage in my neck, shoulders, spine and knees, plus some sort of nerve damage to one shoulder. I was in awful pain, couldn't move, couldn't look after the children or the home.

Normal physiotherapy didn't help as the inflammation just got worse whenever I excercised. Osteopathy helped a bit (but not enough for the money!), cranial osteopathy helped more, as it seemed to send messages to my body to calm down a bit. What really did the trick though was 2 things combined together 1) a gluten free diet - accidental, I was just trying to get healthy - and 2) specialist pilates-based rehab work.

Pilates did three things, firstly it trained my body to relax using gentle breathing exercises and gentle repetitive movements; secondly it worked on stretching out those tight muscles in those hard to reach places; thirdly it worked on building up the core muscles around the abdomen and spine (and the neck too). Once I got there I could restart a more general aerobic exercise regime. It was slow going, taking about two years, but it worked very well. The gluten free diet was a prerequisite, as once I gradually slid back to eating normally once I was fully better (and busy with work and family), the muscle inflammation came back, and stopped responding to the pilates regime.

Do you have someone works like this with you? If you don't, it might possibly help if you can find someone suitable?

Got to go. Got a report to write tonight.

0

Share this post


Link to post
Share on other sites

Do you have someone works like this with you? If you don't, it might possibly help if you can find someone suitable?

Thank you so much for your thoughts! I DO have someone working with me and she employs a number of therapeutic modalities--including core strengthening. I have been cautioned to go slowly by several doctors (ortho, spine, GI celiac specialist) however, and so my rehab is tortoise- like :lol:

(I figure, it was he who won the race, however...)

If I overdo it, I am in burning pain. :unsure:

Thanks for your thoughts. May I PM you with questions I may have? I do not wish to hijack the thread from the original topic.

IH

0

Share this post


Link to post
Share on other sites

IH - please do. Happy to chat about my pet topic! There is more than I wished to put into a brief post.

And slowly is absolutely the way to do it, as you can only go as fast as your body can cope with!

0

Share this post


Link to post
Share on other sites

Maybe some people just have a hard time conceiving that there are some more sensitive than they are. This could be especially so if they were very sick.

Unfortunately, that attitude can be very damaging to someone who is more sensitive. It can convince them not to consider the possibility of super sensitivity. That is what happened to me, and my son and I were sick for many additional months because of it.

This certainly isn't a one size fits all condition.

It sure isn't one size fits all! Maybe you're right about people just assuming all celiacs are the same.

I made the exact opposite mistake as you. I assumed I was reacting to traces of gluten and finally figured out I'm probably getting sick because of a dairy sensitivity. :lol:

0

Share this post


Link to post
Share on other sites

I made the exact opposite mistake as you. I assumed I was reacting to traces of gluten and finally figured out I'm probably getting sick because of a dairy sensitivity. :lol:

SO hard to figure out this stuff sometimes, isn't it? I swear, it would be so much easier if we had, say, little Star Trek medical scanners we could use whenever we have some kind of reaction so we could know what was actually going on. I thought for the longest time that my gluten reaction was an allergy of some kind and my allergies were my gluten reaction. Then realized that it should be flipped around. :D And even now, I'm thinking a couple of the issues I thought were allergies might actually be sulfites.

I think one of the more frustrating challenges we celiacs have to deal with are those 'what the heck' reactions, the ones where we can't see why we're reacting, or what it's from. Is it an allergen, sulfites, chemicals, gluten? And WHAT got us? And how long was the delay before we reacted?

When you add in super-sensitivity, it makes it even more of a challenge. And I think that applies whether it's super-sensitivity to gluten or anything else (like an allergen). When a reaction is not simply to known ingredients but can involve incidental ingredients or cc, it's just another layer of information that one has to sort through while trying to figure out what is safe and what is not. And what the reasons are for reaction X vs. reaction Y vs. reaction Z, and whether it's to the same ingredient/chemical or not.

Sometimes I think that by the end of all of this, we each have more than earned a PhD in 'how our bodies work!' :D

When I reacted to labeled gluten-free foods, I didn't automatically assume that it was from gluten. There are other ingredients in most gluten-free processed foods. It is always the smart route to investigate all possible sources of a reaction.

I don't think anyone would disagree with your statement that it's a smart route to investigate all sources of a reaction. From what I've seen, most people here do eventually check out pretty much everything they can think of, and keep some in mind just in case it might prove to be an issue later. I think it's normal in the beginning to have that moment of thinking everything might be gluten, but it rarely lasts. People seem to expand their search pretty quickly to other foods and other physical conditions as possible problems. At least that's been my experience

But sometimes, things come back to gluten because, well, low level gluten cc is still a part of 'everything' that may need to be investigated. I don't think most here automatically assumes a reaction is from gluten until they've looked at lots of possibilities. But after some research into their own reactions and what they've contacted and consumed, sometimes gluten seems to be the best fit. And even with that, there's always the possibility that it could be something else that happens to coincide with the avoided gluten. I know that's something I keep an eye out for all the time, just in case there's something I'm unaware of that might change a previous conclusion.

With regards to obsessing....to be perfectly honest, it happens.

I would agree - it can happen. I think one problem is that none of us know when it actually is happening unless we know a lot more about someone's life than we typically do in the limited venue of an online forum. We don't usually know a lot about someone's medical history, their reactions, or their full diet. We don't usually know even a large part of what they explore OTHER than gluten, or what methods they've used to determine what they react to and why.

And without that, or at least asking about that, I don't see how we can make an accurate assessment of someone's choices or their mental health.

1

Share this post


Link to post
Share on other sites

It sure isn't one size fits all!

This certainly isn't a one size fits all condition.

If I knew I was going to be quoted on the "there is no one size fits all" line, I would have copyrighted it. :lol: :lol:

I am just kidding, guys. :)

1

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
      104,132
    • Total Posts
      919,525
  • Topics

  • Posts

    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
    • Cyclinglady is absolutely correct, after hours of internet research the only gluten-free food available at JNB is a fast food chain called 'Nandos'. I was hoping for a bit more variety, but I'll take what I get.   
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,167
    • Most Online
      1,763

    Newest Member
    georgemathews
    Joined