Did Celiac Come Back?

[VydorScope]

First, I wonder how many are still here that know me? I looked through my history and it has been five years since I last posted. So much has happened since then... First to save typing time here is my last post:

The very short version, was my son Timothy was very sick, then tested positive for Celiac, then put on gluten-free diet, got better... few years after that was put back on gluten, and had no reaction. All Celiac tests that were originally positive came back negative. All food testing (Wheat, Oats, etc) came back as negative. We thought we closed that chapter in our lives for good. Details are in that longs post/thread up there.

Fast forward five years to recent times. Timothy is getting mysterious GI issues again (nausea, diarrhea, stomach pains, acid reflux, etc). No where near as bad as they were when he was little (Tim is almost 9 now), but slowly getting worse. We took him to an allergy doctor and had them do the scratch test. In the past all that ever came back positive was eggs, but even that had gone away. This test came back as Milk, Soy, Almond, and Oats as allergic. They further tested casein and lactose, but neither of those came back positive. Egg was negative on the scratch. They then took blood for blood testing and in the blood testing everything was negative except for Egg. I do not know (have not seen doc since blood test, just got the results from a nurse) what was in the blood test, but at the very least it contained all the positives from his scratch test. (he did have a bunch of environmental allergies of course, but that is I think unrelated to the GI issues)

So as a family used to food issues, we pulled him all all of that. We know the drill, we know how to read labels, call companies, and etc. Its one of those skills you are grateful to have when you need it, but wish you never did.

So it has been a couple weeks now, and not only has there been no positive swing, it does seem a bit worse. Two days ago we made the call to pull gluten from his diet also so I do not know what impact that has had yet. The caveat on that though is the house has not been gluten-free for years, so cross contamination is of course a huge possibility.

So my question is what does everyone think is going on? Did the Celiac just go into remission and come back? Five years ago when I was active here I read lots of stories about people having issues with milk/etc once there was celiac damage done to their intestines that went away when they healed up. So I do not know if that is part of this? Maybe it is some new allergy/intolerance that we have not discovered yet? The doc has him on three different allergy pills so I would think that if it was allergy related the pills alone should help, right?

We do have an appointment in a month and half to see the doc again, but I am thinking that if we do not see results in a week or so more, I want to try and get in sooner. When he was little we lived in Nashville and had access to lots of great docs but now we live in a small town with very little access to docs so I am a bit concerned about that.

Thanks, and if any of you remember me, HI!!!.

[cyberprof]

So my question is what does everyone think is going on? Did the Celiac just go into remission and come back? Five years ago when I was active here I read lots of stories about people having issues with milk/etc once there was celiac damage done to their intestines that went away when they healed up. So I do not know if that is part of this? Maybe it is some new allergy/intolerance that we have not discovered yet? The doc has him on three different allergy pills so I would think that if it was allergy related the pills alone should help, right?

Thanks, and if any of you remember me, HI!!!.

I do remember you.

My feeling is that celiac never went away, it was just hidden. As sick as he was, he healed and his body wasn't on high-alert anymore and didn't react for a while.

From my understanding flat villi can be caused by something else (tropical sprue, h. pylori, SIBO etc) the blood tests are specific to celiac sprue and not to any other known condition, as they are measuring the body's reaction to the gliadin peptide.

As sick as my son was (not as sick as yours) and even with my son's lack of diagnosis, I would never put him back on wheat, but he's 19 now so that's my son's decision.

[psawyer]

Hi, Vincent! I remember you. Welcome back.

[VydorScope]

HI! Surprised anyone remembers me but thanks!

CyberProf,

If that is true why did multiple blood tests over the years of being on gluten come back negative? We did not mention it to his current allergy doc, but we did have him checked a couple years back by a GI doc and the test was negative at that time too.

It is a bit scary reading the current posts here. Maybe creepy is a bit better of a word then scary. They all sound just like Timothy and us when we first faced this.

Peter,

Thanks for the welcome! I have missed this place, but not real happy about why I am back either. I think you understand.

[psawyer]

To the original question: Did it come back? My thinking is that it never went away, but just entered a silent phase. In young people it seems that it can appear to "go away," but there are so many stories of how it reappeared that I personally do not believe that it can be outgrown, even if symptoms go into remission. That is my personal observation--I have no science to back it up.

[StephanieL]

#1-Allergy testing (both skin testing and blood) are only 50% accurate for a + result. That means that if there is a positive that only half of the time is there actually an allergy. What you are describing doesn't actually sound like a true allergy (IgE mediated) but something else.

#2- I would think it more a possibility that the Celiac damage was healed after being gluten-free for a while and that it has again come to a point that the damage is causing issues.

You didn't mention when the last time he was tested for Celiac was. Was the original dx based on a scope? If so, what was the reason for going back of gluten? There are long term ramifications to not staying on a gluten-free diet if it is Celiac disease (which I am sure you already know).

Before taking anything out of his diet I would do a detailed food log to figure out what exactly the problem is. Good luck!

[Natsy]

That's very interesting. I am recently diagnosed - for the second time after a similar experience. When I was 18 I was diagnosed with Celiac through biopsy. After 6 months of a gluten free diet I was retested and told everything looked normal. The specialist told me to go back on gluten. I don't know why exactly. Probably in part because I didn't notice any huge difference - at the time of diagnosis I mainly had anxiety as a symptom. He also said that this was how they would confirm the diagnoses (which didn't make sense either because when diagnosed he said there was no doubt and scared me with threats of infertility and cancer if I chose to not cut out gluten). Anyway, 7 months or so back on gluten, I was retested and told everything still looked fine, that i didn't have celiac and to go on my merry way. Now two months ago at 34, I go to the dr with some 'indigestion' that wouldn't go away and lo and behold, positive blood test and positive biopsy that shocked the heck out of me. Turns out I've been damaging my body this whole time. Im weary to use the term remission as I don't want anyone to take that to mean it's ok to ingest gluten after being diagnosed, but I think there may be some cases where the body has healed and maybe is able to tolerate gluten for awhile before symptoms build up again. I don't know, but that would explain why drs used to think you could outgrow it. Either way, I sure wish I hadn't been damaging my body for the past 16 years. So many non-classic symptoms that finally make sense. Hopefully I didn't do any permanent damage.

[MitziG]

Your doctors acted in complete ignorance- which is not unusual. Celiac never "goes away" the only treatment is a gluten free diet for life. Your son should NEVER have been put back on gluten. Ever.

What happens, and the reason many drs believed for years that it could be outgrown, is that celiac goes into a sort of "dormancy"- frequently during periods of growth or puberty. The dormancy does NOT mean it is ok to eat gluten during this time though.

The reason your son tested negative is the same reason people who try the diet first and THEN get tested test negative. When you are not eating gluten, the antibodies disappear. Anyone who is in strict compliance and able to avoid cross contamination should see their antibodies drop to zero, or very close to it. Again, this doesn't mean the disease is gone, it means the auto immune process has stopped, because it has nothing to trigger it.

That is a good thing, and the goal of all celiacs- keep the auto immune process silent so that an active disease state does not return.

Celiac is not an allergy per se, so a scratch test is not going to show anything, unless he actually has a gluten allergy in addition to celiac.

He needs to be strictly gluten free, now and for always. Do NOT put him back on gluten and dink around with more tests while his un-informed doctors debate about whether he does or doesn't have celiac. He does. He did. And he will always have.

I don't mean to be harsh, but I was one of those kids who was told they outgrew it. And I spent 20+ years happily eating gluten and constantly being sick with every bug known to man and so fatigued I wanted to die. A little over a year ago I found out I had celiac- then AND now- and my life has changed drastically. But I can't get back the years I lost. So I am BEGGING you, don't subject your son to that. The hope that he is not celiac is a vain one, and you will learn that. Do your homework, contact celiac specialists if you will- you will see that the information I tell you is true. Celiac Disease does NOT go away!

[VydorScope]

The reason your son tested negative is the same reason people who try the diet first and THEN get tested test negative. When you are not eating gluten, the antibodies disappear. Anyone who is in strict compliance and able to avoid cross contamination should see their antibodies drop to zero, or very close to it. Again, this doesn't mean the disease is gone, it means the auto immune process has stopped, because it has nothing to trigger it.

The one point here that I need to clarify is that he had been on gluten for over a year and we retested again, it was still negative. It has been almost 5 years since he has had symptoms at all. So it is not the same as going gluten-free for a while, then eating a little gluten and retesting. If it is celiac disease, then I have to assume it can go dormant, or in to remission, or something because nothing else seems to fit.

That being said we have started gluten-free again and should know soon if it makes a difference, though I need pick up a few more things because I know our kitchen is not currently gluten safe. Some pots, plastic containers, seasonings, etc will need be replaced. And so on.

[MitziG]

When I went back and read your first post the length of time he was eating gluten wasn't clear to me, sorry. However, I had raging celiac for over 30 years. When they did my endoscopy the GI was shocked by the amount of visible damage. He could not believe I didn't have constant diarrhea or that I was absorbing anything.

But guess what, the ONLY lab I tested positive on was the ttg IGG- and it was a weak positive of 6, with less than 4 being negative.

Sometimes the labs do not reflect an accurate picture of what is going on. Then again, they never tested me during my "silent" phase- perhaps I wasn't making antibodies at all then. What I know is that when I got to be about 12, all of the vomiting in response to gluten stopped. About 17 it started again, but not with the severity of before, and never an immediate reaction to eating wheat, so we didn't make the connection. The pattern of 2x a month vomiting plus once a week diarrhea continued for 20 years after. I just thought I had a "touchy" digestive system. My overall health declined considerably, and drs dismissed me as a depressed hypochondriac.

I am still a bit bitter about that, so when I see people who are trying to wish away the reality of celiac it is upsetting.

[VydorScope]

I am still a bit bitter about that, so when I see people who are trying to wish away the reality of celiac it is upsetting.

I fully understand that. Your passion was apparent in your post, and very understandable.

I would actually be happier to deal with just avoiding gluten again then the whole list of things that he tested for on the scratch test. Esply soy. Its flippin everywhere. At least my Kroger as a gluten-free section now. It pretty amazing to see how much the gluten-free options have grown in the last 5 years.

The first time around here I read a lot of stories of people who had celiac disease "disappear" during adolescence and return later, but Timothy is only 8. I do not recall ever reading a story where it "went away" and came back in his age bracket. I read lots of theories about all the hormones involved with adolescence (Praise God that is behind me! What a time that was!) blocked the immune response to gluten but nothing I would call conclusive.

Right now all I have is that removing the stuff he scratch tested positive for has had no impact. I am thinking of asking the doc to redo the scratch test. The nurses are great, but only human. Perhaps they swapped a row in their labeling and we have the wrong list of foods to avoid.

[Sesara]

I fully understand that. Your passion was apparent in your post, and very understandable.

I would actually be happier to deal with just avoiding gluten again then the whole list of things that he tested for on the scratch test. Esply soy. Its flippin everywhere. At least my Kroger as a gluten-free section now. It pretty amazing to see how much the gluten-free options have grown in the last 5 years.

The first time around here I read a lot of stories of people who had celiac disease "disappear" during adolescence and return later, but Timothy is only 8. I do not recall ever reading a story where it "went away" and came back in his age bracket. I read lots of theories about all the hormones involved with adolescence (Praise God that is behind me! What a time that was!) blocked the immune response to gluten but nothing I would call conclusive.

Right now all I have is that removing the stuff he scratch tested positive for has had no impact. I am thinking of asking the doc to redo the scratch test. The nurses are great, but only human. Perhaps they swapped a row in their labeling and we have the wrong list of foods to avoid.

One thing that I have come across in the course of my reading is that Celiacs are far more likely to develop allergies to other foods, because their immune systems are on "high alert" already from exposure to gluten, which it views as an invading pathogen. Additionally, and less scientifically proven, but with some evidence to back it up, is the idea of "leaky gut" causing temporary allergies/sensitivities. The idea is that damage to the gut causes bacterial overgrowth, usually of yeast, which causes the gut to "leak" proteins from digesting foods into the body, which then causes an immune reaction to said proteins. If you can heal the lining of the gut so that it no longer "leaks", and stop bombarding the immune system with gluten, the idea is that eventually, the body will stop reacting to many of the things that are showing up as a sensitivity on such allergy tests as the one you mention. You could look into a gut healing protocol for your son - they are not a good long term diet for most people to live on, but a short term use of it could potentially help him get back to a point where you can start to re-introduce foods and see if they bother him or not - excepting gluten of course.

[Lisa]

Hi Vincent and welcome back!

Here is the current blood test for Celiac, but of course you know that Tim needs to be on a full gluten diet for be best accuracy.

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

[Mom2J112903]

Sorry I did not read all of the replies but "once a Celiac, always a Celiac" there is no going off gluten and then years later being able to eat it again without symptoms.

[MitziG]

What I have learned is that this is one weird disease. The only thing predictable about it is its unpredictability. My son and daughter both are dx celiac as well, but all three of us have very differeent reactions, symptoms before dx, etc. My dd was 12 at dx and had no obvious symptoms. She did have mild eczema, and her tummy always stuck out, but that was it. She tested very high for bloodwork and had a very positive biopsy.

[jerseyangel]

Hi Vincent how nice to see you back but I'm so sorry Tim is having problems again. Taking into consideration all that happened when he was little--most importantly the positive test--my opinion is that the Celiac is rearing it's ugly head again.

One thing I have seen from time to time in the years I've been around the board is that sometimes after a person goes gluten-free, no matter how long they go back on gluten the testing just doesn't come back positive again. Now, that is just my personal observation and may not have anything to do with anything-- but who knows, maybe enough healing occurs to skew the testing.

At any rate, a full workup is in order when you can get him into the GI--just to rule out anything else that might be going on in addition to the Celiac testing (don't have to tell you to keep him on gluten till then ).

I hope Tim gets to feeling better really soon--my best to your family!

[GFinDC]

Hi Vincent,

Food allergies are important to test for, as they can cause plenty of symptoms, some of them severe. Food intolerances are a separate thing and they can also cause many symptoms, but there are not many good tests for them. You won't find out about food intolerances by doing allergy testing.

The food intolerance tests I am aware of are lactose intolerance and fructose intolerance. Enterolabs has tests for eggs and a few other things, but I don't know how reliable the tests are.

The best method and the only valid method for testing most food intolerances is an elimination diet. That's just the best test that is available for most of them at the moment.

If you go to Enterolabs site Dr. Fine has a paper on there about celiac testing. He suggests that the antibodies for gluten are mostly located in the gut, not floating aimlessly around the body in the blood stream. They go where they are needed and mostly stay there. If he is correct that would explain why celiac is so hard to detect in the bloodstream. The testers are looking in the wrong place. I think he makes a lot of sense in that respect. From the little reading I have done on the immune reaction, it seems that is the typical pattern, the immune cells go to where the injury or enemy is and concentrate there. They wouldn't be much use if they didn't do that.

[VydorScope]

It seems the general opinion of this thread is that he has had celiac disease all along it just went dormant/silent/something for a while?

[Takala]

I am only speaking for myself when I give an opinion. I did not give an opinion earlier on this thread. Because I had to compose myself first.

I honestly do not comprehend why anyone with this story would put their child back on gluten..... I have seen and read here of other people doing this, with the same eventual dismal result. I hope this child is put back on a gluten free diet as soon as possible. Because once off of gluten for a long period, it is very difficult to have the standardized re- tests show that the patient is celiac. And the medically ordered gluten - challenges are used as an excuse to keep eating the garbage, yet they frequently give a negative result, because the damage sometimes takes years to be medically detectable in the intestines. Meanwhile, the ravages of auto immune disease reactions continue destroying other body organs and glands, damaging bone, joints, even attacking the brain. Thus the patient is now officially labeled "normal." When they are not. They suffer.

And that is about as polite as I can be about it.

[Mom2J112903]

Thank you for saying what I couldn't say nicely. All I could say was "once a Celiac, always a Celiac" It is NEVER going away and why someone would think differently is beyond me as well.

I am only speaking for myself when I give an opinion. I did not give an opinion earlier on this thread. Because I had to compose myself first.

I honestly do not comprehend why anyone with this story would put their child back on gluten..... I have seen and read here of other people doing this, with the same eventual dismal result. I hope this child is put back on a gluten free diet as soon as possible. Because once off of gluten for a long period, it is very difficult to have the standardized re- tests show that the patient is celiac. And the medically ordered gluten - challenges are used as an excuse to keep eating the garbage, yet they frequently give a negative result, because the damage sometimes takes years to be medically detectable in the intestines. Meanwhile, the ravages of auto immune disease reactions continue destroying other body organs and glands, damaging bone, joints, even attacking the brain. Thus the patient is now officially labeled "normal." When they are not. They suffer.

And that is about as polite as I can be about it.

[Lisa]

I am only speaking for myself when I give an opinion. I did not give an opinion earlier on this thread. Because I had to compose myself first.

I honestly do not comprehend why anyone with this story would put their child back on gluten..... I have seen and read here of other people doing this, with the same eventual dismal result. I hope this child is put back on a gluten free diet as soon as possible. Because once off of gluten for a long period, it is very difficult to have the standardized re- tests show that the patient is celiac. And the medically ordered gluten - challenges are used as an excuse to keep eating the garbage, yet they frequently give a negative result, because the damage sometimes takes years to be medically detectable in the intestines. Meanwhile, the ravages of auto immune disease reactions continue destroying other body organs and glands, damaging bone, joints, even attacking the brain. Thus the patient is now officially labeled "normal." When they are not. They suffer.

And that is about as polite as I can be about it.

I can assure you that Vincent is an extremely passionate parent, who in no way would endanger his child. I was around when his son was going through difficulties, many years ago. He came here to ask for information. I hope he found what he was looking for.

[VydorScope]

I am only speaking for myself when I give an opinion. I did not give an opinion earlier on this thread. Because I had to compose myself first ... And that is about as polite as I can be about it.

Thank you for saying what I couldn't say nicely. All I could say was "once a Celiac, always a Celiac" It is NEVER going away and why someone would think differently is beyond me as well.

I appreciate both of you, thank you for taking the time to be civil about something you both have great reason to be passionate/angry about.

I just got back from a trip to the store. $250 later we have new pots/serving spoons/etc. Slowly working through re-gluten-free'ing our house.

[VydorScope]

I can assure you that Vincent is an extremely passionate parent, who in no way would endanger his child. I was around when his son was going through difficulties, many years ago. He came here to ask for information. I hope he found what he was looking for.

Thank you, Lisa.

[Jestgar]

Yep, what Lisa said.

Hi Vincent, I also remember you from previous years and I'm sorry you're back. I hope you find answers soon, for Tim's sake.

I think it's unlikely, but not impossible that Tim initially healed well enough to have no problems with gluten, but you have to realize, if something triggered it once, it will be triggered again (and again). Maybe this time he has issues without antibodies, or maybe he'll develop antibodies and damage if he eats gluten long enough. At least you already know the drill, and if removing gluten helps his symptoms, I guess you know the answer too.

[jerseyangel]

It seems the general opinion of this thread is that he has had celiac disease all along it just went dormant/silent/something for a while?

If you ask me, yes.

I can assure you that Vincent is an extremely passionate parent, who in no way would endanger his child. I was around when his son was going through difficulties, many years ago. He came here to ask for information. I hope he found what he was looking for.

Ditto

I just got back from a trip to the store. $250 later we have new pots/serving spoons/etc. Slowly working through re-gluten-free'ing our house.

Well, you know what you have to do, as you've done it all before How does Tim feel about all this?