How Long Off Gluten Before Int Can Affect False Negative Test Results

[dawnsusan]

Hi,

This is my first post. Please forgive me if I am asking questions that can easily be answered with a little research. I did check archives briefly, and didn't find anything.

Here is my issue:

I have a son with autism. He has had GI problems since age 2 weeks ( when he had to have breast milk supplimented by formula and "calorie enhancer"due to a cleft palate that caused him to not nurse).

Because of the autism, he has been gluten-free and casein free for nearly two years. We manage well and he feels a lot better and his bowel movents are normal and pain free. When a small gluten "infraction" caused bloody diarrhea and severe pain, I asked his pediatrician for some bloodwork. She did a tTG test only, after telling me that it didn't matter that he has been gluten free. Of course it came back negative. He is now awaiting an appt. with Dr. Tim Buie in Boston, who specializes in autism and GI issues.

Anyway, when my son went gluten-free, I did too. Lo and behold I started feeling great! I went on and off and on and off, with some self-discipline problems ( hey! it might all be in my head anyway -- why should I not have that piece of pizza when I may not even have celiac disease.....etc...)

A few months ago, I decided that I really wanted to be tested. I was convinced that if I knew I had celiac, I wouldn't ever knowingly touch gluten again. It would be an automatic closed door. A doc at my HMO said he would test me, so I went on gluten for about three months. Got nice and symptomatic. When I went back to be tested, there was a new doc who told me the same old story I'd always gotten -- it's an expensive test, I'm not convinced you have it. You have irritable bowel, anxiety, etc....Wouldn't do the test.

Two and a half weeks ago, I went back off glutenjust because I felt cruddy. I changed doctors, and saw a new one today and what do you know -- she took me seriously! She ordered an antigliadin antibody test. Told me to do it whenever I was ready, as she didn't not know about lengths of time needed to be on gluten to get meaningful test results.

Questions : Is the antigliadin antibody test reliable? How do I maximize my chances of getting a true result?

How long do I have to be on gluten (I was on three months, then off for 2.5 weeks.) to maximize true results.

If I have an HMO and they only pay for basic testing, which is the best test to do?

Is antigliadin antibody the IgA test?

Does anyone who has not been tested, or gotten negative test results struggle with staying gluten-free just because "it might not be celiac?" If so, how do you handle it? I get some snooty, subtle "you're-a-crazy-lady" pressure from some family members some of whom I believe also have celiac disease!!! This is annoying. But if I do test positive, then I can get my sister, and father to be tested. I am confident that they will listen to me if I can "prove" something. I dislike being the family flake ( eats organic, believes in acupuncture, treats medical issues with diet, makes own yogurt), but hey, someone's gotta do it.

Thanks in advance!

Dawn

[CarlaB]

From one family flake to another ... I did a 6 week gluten challenge and they found no damage. I need to add that before my gluten challenge (so I was gluten-free!), they only tested for IgA, which was negative, but should have tested for the other 4 markers. They only took 3 biopsies, they should have taken 6-8. The gluten challenge should have been a minimum of three months eating the equivalent of three slices of bread per day, mine was six weeks, not even eating it every day because it made me so sick. Can I trust the lab they sent my biopsies to for analysis? I doubt it. GI docs themselves will tell you the endoscopy can prove celiac but cannot rule it out.

So, I got tested by Enterolab thinking I could then convince my family they needed to be tested too. I got high positives on their tests! Yet, I'm still the family flake!! The problem is they're too comfortable with where they are and don't see the need to be tested. But I'm not willing to make myself intentionally sick with something I know makes me ill for the biopsy to be done correctly. My kids and husband won't let me near gluten because they know how sick it makes me, that's all that matters.

I was lamenting my inadequate testing in my yearly check-up with my ob/gyn and he said to quit looking for clinical proof because dietary response IS clinical proof. So, do the tests if you feel you need them. You know it makes you sick, that should be proof enough for you to stay away from it!!

[Kaycee]

I went off gluten at the begginning of the year for about 4 weeks before I had my blood test. I did a couple of times during those weeks eat gluten as I wasn't quite convinced, or else just needed to try it.

Nevertheless, the results came back weakly positive to coeliac. I have had two more blood tests since, and I have not been eating any gluten, apart from times when I have accidently glutened myself. Both of these later blood tests still came back weakly positive, but the levels are coming down. I don't know if it is just me, that the levels are still up there or whether this is normal.

I hope this helps, but like everybody else says, if you feel better off gluten, why not keep being gluten free.

Cathy

[oceangirl]

I went off gluten at the begginning of the year for about 4 weeks before I had my blood test. I did a couple of times during those weeks eat gluten as I wasn't quite convinced, or else just needed to try it.

Nevertheless, the results came back weakly positive to coeliac. I have had two more blood tests since, and I have not been eating any gluten, apart from times when I have accidently glutened myself. Both of these later blood tests still came back weakly positive, but the levels are coming down. I don't know if it is just me, that the levels are still up there or whether this is normal.

I hope this helps, but like everybody else says, if you feel better off gluten, why not keep being gluten free.

Cathy

I am just reading all the family issues and, I must say, it can be frustrating! I have a Mom who's a wonderful French and Greek cook, believes in grains and is difficult to convince how sick I've been. Like Carla, my kids and Michael know firsthand what's been going on and they are unbelievably supportive. They don't like to see me in pain. Every single day this year was a struggle and "iffy" as to whether I'd get through the day at work. I only think I did cause I have to and because I work in Special Ed with emotionally and behaviorally disturbed teenagers, so it doesn't get dull, shall we say, at work. It's true; people have "comfort zones" and don't like to stray. I've always been the Black Sheep, so, I guess I'm used to it. good luck with your son. My son has struggled with behavioral issues at school his whole school life-(eighth grade now) -and has an auditory processing disorder. I wonder about having his genes tested. But, boy, he likes his cereal and pizza. My daughter would be tested, (junior/high school), but it's a lot of money. They don't otherwise have outward symptoms. I'm rambling... Good luck to you and yours.

[mamaw]

Hi & by all means count me in on a family organic flake!!! Every family needs at least one. It's a tough job but they have to have someone to nik-pic on. I really don't care .... When one gets sick & the docs can't come up with a dx they call begging me for info. I always give it but at times I want to say but yoy know I'm the flakey one.

I say if you feel better without wheat & gluten then stay off of it. I have friends who have no reason for going off of it except they say they feel better. And with that they don't care if they don't have any illness related to not eating the junk...They happen to own a health food store.

Some people want 100 % proof they have celiac before they will consider but I was tested. If I tried something &it made me feel better I would continue.

For me it's like Milk, I have no problem with it but I feel better without it.everyone's body responds to things differently.....

good luck .

Dawn, I'm glad you found another doctor, don't give up. My hmo paid for all my testing & scopes, and with a small fight also my DNA testing.

[dawnsusan]

My son has struggled with behavioral issues at school his whole school life-(eighth grade now) -and has an auditory processing disorder. I wonder about having his genes tested. But, boy, he likes his cereal and pizza. My daughter would be tested, (junior/high school), but it's a lot of money. They don't otherwise have outward symptoms.

Thank you to everyone who replied. This is looooong, sorry, but I am so elated to be able to talk to people who understand. I'm sure I'll settle down soon. This certainly helps me right now and I am grateful to you.

Just for the record -- I don't seem to have the willpower to just stop forever if I am not sure I need to. What if it is anxiety and related irritable bowel? What if I am a hypochondriac? What if it is just a "little intolerance" and I stay off it most of the time but eat it a few times a year? Blah blah blah. I know how important it is to NEVER eat gluten if you actually have celiac so I think I would be playing a mental roulette for the rest of my life, always wondering, then feeling guilty if I eat it. I admire people who just stay away from it without having test proof that they need to.

I expect that I could be faced with having to do that anyway, if I get negative test results. I guess I could assume it is celiac and take the necessary no-gluten-forever stand. My dad has viteligo ( autoimmune skin disease) chronic "psoriasis" what I think is DH, and lactose intolerance. He is WAY out of whack, constantly bloated in the gut, and has gas. I also remember him going to the bathroom with a magazine and staying in there for an HOUR. He still does that. My sister has adult cystic acne, lactose intolerance, and severe migraines, my dad's mother has lifelong "diverticulitis" and lactose intolerance, her sister, now deceased, had lactose intolerance, and such severe osteoporosis that she broke her hip around age 50, and at the end of her life would break foot bones when standing up, break ribs when sneezing, and have bones broken in her when people rolled her in bed. They are all from Wales.

I have read that all of these things could be signs of celiac in non-bowel symptomatic folks.

I have GI symptoms, fibromyalgia, history of bone pain as a kid -- it drove me crazy -- lactose intolerance, restless leg syndrome, depression/anxiety battles which reduce when I feel well, brain fog, heart palpitations and really bad periods when I am on gluten. I do feel better off gluten, but if I do eat it, it takes a week or two to see GI symptoms....so it is easy to just go to that Italian restaurant "one time, just this once!" because it takes time for the "payback" to show up, and I can talk myself out of it being related to the pasta and italian bread dipped in olive oil I had three weeks ago!

From what I have read about gluten and auditory processing/behavioral issues/add/autism in kids is that there is a high correlation between gluten intolerance and these issues.

My son also has huge auditory processing problems. He passed most of the a.p. testing with flying colors, but then failed a section related to auditory memory. I don't think he got one right. The audiologist said she'd never seen that before. Makes it kind of hard to give instructions to this child, or teach steps, or explain something, or have a normal conversation with a "volley" of ideas.

Just a thought -- my son is unable to manage in a normal classroom when he is on gluten. He can't even communicate decently, stay in his seat, understand schoolwork. He gets upset very easily --thinks kids are picking on him when they aren't. He can't even hold his body still. When he is off gluten, he is fine, happy, fairly patient, and eager to learn, although it helps if he has an aide in the classroom to help with his processing problems. He also has very severe GI symptoms, but we can tell within a day or two in his behavior if he snuck a goldfish cracker at school( he is a little boy and he does have autism). His entire demeanor changes -- we say we can see it in his eyes. It takes about four days to see GI signs. It takes about three weeks or more to have a very simple infraction clear out of his system.

I am sure you know the percentage of 1st degree relatives of celiacs who also have it......

You might try paying your teen son to go off gluten for a few weeks. I pay my kids 25 cents a day to take some suppliments they find particularly nasty -- Cod liver oil, GSE, and B vitamins, which have a smell to them that makes one of my kids gag.

They have the opportunity to earn $1.50 extra per week without having to weed the garden! Believe me, they do it.

With a 12 or 13 year old, you might have to cough up big bucks, (like a PSP!) but I have heard this works in my community of parents who have kids on the autism spectrum-- they feel so much better in the month they are off gluten that they don't want to go back on it. They have social success that is important, schoolwork comes easier, they sleep better, whatever!

They are also able to try it safely knowing it's for a finite time -- not forever , like Mom has to. So it's not a sentence, just an experiment.

I will be trying this with my seventh grade daughter when she gets back from visiting relatives for summer. She does not have autism, but along with her nearly debilitatingly HIGH IQ, she has attention issues, anxiety, eczema, insomnia, and a rather contrary personality with mood swings that I can connect to foods she eats,, and positive IgG testing for wheat allergy. hmmmm.......and it's time this year to deal with this issue.

I also have a completely neurotypical kid with no allergies, no behavioral issues, no gluten problems, no learning problems, and no sensitivities, except for mosquitos. Poor, poor middle child!

Thanks again to you all. This means a lot to me.

Dawn

[oceangirl]

Thank you to everyone who replied. This is looooong, sorry, but I am so elated to be able to talk to people who understand. I'm sure I'll settle down soon. This certainly helps me right now and I am grateful to you.

Just for the record -- I don't seem to have the willpower to just stop forever if I am not sure I need to. What if it is anxiety and related irritable bowel? What if I am a hypochondriac? What if it is just a "little intolerance" and I stay off it most of the time but eat it a few times a year? Blah blah blah. I know how important it is to NEVER eat gluten if you actually have celiac so I think I would be playing a mental roulette for the rest of my life, always wondering, then feeling guilty if I eat it. I admire people who just stay away from it without having test proof that they need to.

I expect that I could be faced with having to do that anyway, if I get negative test results. I guess I could assume it is celiac and take the necessary no-gluten-forever stand. My dad has viteligo ( autoimmune skin disease) chronic "psoriasis" what I think is DH, and lactose intolerance. He is WAY out of whack, constantly bloated in the gut, and has gas. I also remember him going to the bathroom with a magazine and staying in there for an HOUR. He still does that. My sister has adult cystic acne, lactose intolerance, and severe migraines, my dad's mother has lifelong "diverticulitis" and lactose intolerance, her sister, now deceased, had lactose intolerance, and such severe osteoporosis that she broke her hip around age 50, and at the end of her life would break foot bones when standing up, break ribs when sneezing, and have bones broken in her when people rolled her in bed. They are all from Wales.

I have read that all of these things could be signs of celiac in non-bowel symptomatic folks.

I have GI symptoms, fibromyalgia, history of bone pain as a kid -- it drove me crazy -- lactose intolerance, restless leg syndrome, depression/anxiety battles which reduce when I feel well, brain fog, heart palpitations and really bad periods when I am on gluten. I do feel better off gluten, but if I do eat it, it takes a week or two to see GI symptoms....so it is easy to just go to that Italian restaurant "one time, just this once!" because it takes time for the "payback" to show up, and I can talk myself out of it being related to the pasta and italian bread dipped in olive oil I had three weeks ago!

From what I have read about gluten and auditory processing/behavioral issues/add/autism in kids is that there is a high correlation between gluten intolerance and these issues.

My son also has huge auditory processing problems. He passed most of the a.p. testing with flying colors, but then failed a section related to auditory memory. I don't think he got one right. The audiologist said she'd never seen that before. Makes it kind of hard to give instructions to this child, or teach steps, or explain something, or have a normal conversation with a "volley" of ideas.

Just a thought -- my son is unable to manage in a normal classroom when he is on gluten. He can't even communicate decently, stay in his seat, understand schoolwork. He gets upset very easily --thinks kids are picking on him when they aren't. He can't even hold his body still. When he is off gluten, he is fine, happy, fairly patient, and eager to learn, although it helps if he has an aide in the classroom to help with his processing problems. He also has very severe GI symptoms, but we can tell within a day or two in his behavior if he snuck a goldfish cracker at school( he is a little boy and he does have autism). His entire demeanor changes -- we say we can see it in his eyes. It takes about four days to see GI signs. It takes about three weeks or more to have a very simple infraction clear out of his system.

I am sure you know the percentage of 1st degree relatives of celiacs who also have it......

You might try paying your teen son to go off gluten for a few weeks. I pay my kids 25 cents a day to take some suppliments they find particularly nasty -- Cod liver oil, GSE, and B vitamins, which have a smell to them that makes one of my kids gag.

They have the opportunity to earn $1.50 extra per week without having to weed the garden! Believe me, they do it.

With a 12 or 13 year old, you might have to cough up big bucks, (like a PSP!) but I have heard this works in my community of parents who have kids on the autism spectrum-- they feel so much better in the month they are off gluten that they don't want to go back on it. They have social success that is important, schoolwork comes easier, they sleep better, whatever!

They are also able to try it safely knowing it's for a finite time -- not forever , like Mom has to. So it's not a sentence, just an experiment.

I will be trying this with my seventh grade daughter when she gets back from visiting relatives for summer. She does not have autism, but along with her nearly debilitatingly HIGH IQ, she has attention issues, anxiety, eczema, insomnia, and a rather contrary personality with mood swings that I can connect to foods she eats,, and positive IgG testing for wheat allergy. hmmmm.......and it's time this year to deal with this issue.

I also have a completely neurotypical kid with no allergies, no behavioral issues, no gluten problems, no learning problems, and no sensitivities, except for mosquitos. Poor, poor middle child!

Thanks again to you all. This means a lot to me.

Dawn

Dawn

Thank you about the auditory processing thing. I would like to see if we could get Luke off gluten but he can be very stubborn about this. I love your resourcefulness. I work as well with autistic teens and those with Asperger's and am aware of the food connection. His problems are pretty much entirely school-related. He is also quite gifted as a designer and mechanic like his Dad, who's a lobsterman, and does great out of school. I have also been loathe to use any drugs with him. But I do get tired of the school meetings- already go to enough of those! Because of my issues, we are leaning toward being more of a non-gluten household which I'm hoping may help me shift him over completely. My daughter is leaning toward non-gluten; she's vegetarian already- but she's thin and I hate for her to lose more foods! Good luck to you and your family!

[Deb B]

I can totally relate to the "maybe it's all in my head" feeling. I tested negative to a blood test.

I've had IBS symptoms for 2 years, with severe painful bloating-for a while it was once a week--and frequent diarrea. I couldn't identify any one food that seemed to provoke symptoms and then it dawned on me it might be something I ate all the time. Finally, I read about wheat and decided to cut out the wheat and I felt better in about 3 days. I already consumed very little dairy. I've been on and off wheat for about 6 months. I still get diarrea, usually after consuming food I didn't prepare. It often takes a day to a day and a half to kick in. Milk products, especially industrial additives like powdered milk or whey can really affect me too.

I had had a colonoscopy shortly before the symptoms got strong enough for me to notice (about 2 years ago) so I was sure I didn't have a serious illness. I also wonder if that procedure is what brought it on. I was also tested for parasites since my daughter had had pinworms. My energy levels are pretty good and except for 2 instances of allopecia (isolated hair loss that grows back) in the past year, I can't say I'm unhealthy. I'm 46 and do not drink and consume very little alcohol and am active physically. I feel I'm much more energetic than most people my age.

When I went to get tested I told the internist that I had been avoiding wheat for over 4 months. My negative results did not convince her I had any intolerance. She prescribed an anti-spasmodic that was so strong I felt drugged. I took it once or twice and said no, way.

But of course I was tempted to eat wheat again. I end up having diarrea for about 48 hours approximately 1- 1.5 days after consuming it. I have weird looking stools, undigested food that looks like sawdust, bubbly effervescent watery stuff, yellowish watery stuff. When I avoid wheat my stools are usually normal. Taking enzymes helps --maybe against dairy intolerance-- and a powder called "green magic" really helped me. It contains wheat grass juice, but didn't seem to bother me. I'd be interested to know if wheat grass juice can be tolerated.

It's really hard to avoid eating wheat when eating prepared products or going to a restaurant. I know that when I eat brown rice and steamed vegetables I'm fine. By changing my diet, I've gone up to 2 weeks without any bad symptoms. I need to have normal BMs 2-3 times a day to feel good.

When I'm symptom free for a while, I think maybe it's all in my head, but I try to remember how inflamed I felt (a burning like feeling) and that when I stopped eating wheat I felt relieved so quickly.

I'm going to so a holistic doctor soon who works a lot with diet and see what she thinks. I doubt the internist at the HMO will take me seriously since I tested negative.

Any thoughts? When I don't have symptoms I forget about my digestive track. It's hard to believe I'd develop IBS so suddenly and when the rest of me is so healthy.

Deb B

[eKatherine]

Several things to keep in mind...

• Being a hypochondriac doesn't rule out celiac.
  
• IBS often clears up when the patient goes on a gluten-free diet against their doctor's wishes. Often it's an diagnosis of symptoms - We don't know what you have, but we're so sure it's not celiac that we didn't bother to test for it.
  
• The first real symptoms of celiac you are unable to ignore may be irreversible neurological ones.
  

[GravStars]

Just for the record -- I don't seem to have the willpower to just stop forever if I am not sure I need to. What if it is anxiety and related irritable bowel? What if I am a hypochondriac? What if it is just a "little intolerance" and I stay off it most of the time but eat it a few times a year? Blah blah blah. I know how important it is to NEVER eat gluten if you actually have celiac so I think I would be playing a mental roulette for the rest of my life, always wondering, then feeling guilty if I eat it. I admire people who just stay away from it without having test proof that they need to.

I completely relate to this but I don't have medical insurance so my options are more limited. I decided to go gluten-free for at least a month, see how I improve and if I react to eating it again after that period, and then (regardless of that response) to order the stool test from Enterolabs (Open Original Shared Link) because you can be off gluten for up to a year or more and still get a positive diagnosis through the stool test. So that's an option.

Good luck figuring it out.