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mikewtf

Need Help Please-very High Anti Ttg False Biopsy

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I have a very weird problem and need some advice.

blood tests-anti ttg 223 (very very high)

anti endomysium Iga detected

biopsy results-negative although I had been gluten free for 5 weeks.

brunners glands not seen,short and blunt villi but most of the villous and crypt architecture is unremarkable.Focal increase in intraaepithelial lymphocytes up to 30/100 epithelial cells.

I don't think the blood result reflects the biopsy even though I was gluten free for 5 weeks.

Have heard that other conditions like liver disorders or rheumatoid arthritis can cause high anti ttg.

Have had a abnormal iron level and phosphate test once but on retesting it was fine.

Had a fairly low B12 result of 400.

Do get sore joints in my fingers at times.

I have Raynauds which has also got a lot worse.

I have gradually worsening neurological problems which flare up every few weeks since breaking my collarbone May 07,MRI of brain-neck negative for what I think could be MS Dec 07.Some of the neurological problems I had before the broken collar bone but they have got worse.Neurologist cant see anything too abnormal on examination.

MRI showed a polyp in the right sphenoid sinus which may be causing painful headaches and eye infections.

Gluten free since April 08 and did have a slight improvement in health and energy levels.I have always had a problem with white bread and stopped eating that 7 years ago.

Im waiting to get a CT scan done of the sinus and possibly another MRI.Doctors in the past

Does anybody have any idea about other disorders with high anti ttg and what sort of levels anti ttg show up in those?I heard chrons disease can have slightly elevated anti ttg but not that high.

Thanks

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Please note that it is EXTREMELY rare to have a false pos. on the blood, but EXTREMELY common to have a false neg. on biopsy. Biopsy is an art. If the GI didnt take the samples from the right places (damage can be patchy), then it will come back neg. PLUS 5 weeks IS enough time for enough healing to have taken place for a false neg.

IMO you are Celiac and should stay on the gluten-free diet. Retest in 6 months to a year and see those numbers come DOWN.

You can also ask for genetic testing for a little more information.


GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!

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Welcome aboard, Mike!

I'm not a doctor, so I can't rule OUT anything. But if you are making antibodies to gluten, you should not eat gluten. If you made antibodies to peanuts, nobody would dream of telling you to keep eating peanuts!

But every problem you describe as already been described on this board by people whose symptoms totally disappeared on a gluten-free diet, so I believe those problems are all symptoms of celiac.

Rheumatoid arthritis can be CAUSED by gluten and casein, which explains why we see high anti-ttg in RA patients--RA doesn't cause high anti-ttg, it's the other way around.

Gluten intolerance (and often casein intolerance) causes RA.

It also either causes or exacerbates Raynaud's.

It also causes low B12 and anemia (because of poor absorption of nutrients because of damaged villi).

It also causes neuro problems, sometimes severe.

As the above poster pointed out, 5 weeks off gluten is enough to let damaged villi heal, and your doctor should have known that and told you that before ordering the biopsy.

Most of us on this board had to at least temporarily go off dairy as well as gluten. Many of us were able to add it back to our diets after our villi healed (a couple of months on the gluten-free diet, sometimes more). I've seen quite a few articles linking dairy (as well as gluten) to RA, so I would suggest you give that a try.

Are your symptoms improving at all on the gluten-free diet? You might want to be sure to either avoid or go very light on things like gluten-free breads, cookies, cakes, etc., until your gut is fully healed, as those products are very tough for a gluten-damaged tummy to digest (it'll feel like you swallowed a brick).

If you have no relief from your symptoms on a really strict gluten-free diet, you might want to look into other possibilities, such as Lyme Disease (there are several members of this board who have been diagnosed with Lyme), mercury toxicity (more common than you'd think), and Candidas (a systemic yeast infection common to celiacs).

But in the meantime, being strict with the gluten-free thing is often tough for newbies. Most of us here have been shocked to find gluten in the most unexpected places, such as:

Rice Krispies

Corn Flakes

deli tuna salad (contains bread crumbs)

"lite" ice creams

Soy sauce (most brands, but not all)

medications

envelopes (the sticky part you lick--don't lick any more)

surimi (fake crab stix--most brands contain wheat starch)

Rice Dream rice milk (says gluten-free on the box and ISN'T :ph34r: )

There are lots more possible pitfalls. Others will probably weigh in with them,

Lotsa luck! And ask lotsa questions--this board is a great resource!

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You have gotten a couple of good replies that I agree with whole heartedly. Do give yourself a good strict trial on the diet for at least 6 months. Welcome to the board and feel free to ask any questions you need to. IMHO you have found your answer to your issues. Time will tell, I know it did for me. I never expected to lose anything other than my constant D on the diet and had no idea it would also clear up so many of my autoimmune mediated issues that the doctors had mainly said 'learn to live with it' about.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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You have gotten a couple of good replies that I agree with whole heartedly. Do give yourself a good strict trial on the diet for at least 6 months. Welcome to the board and feel free to ask any questions you need to. IMHO you have found your answer to your issues. Time will tell, I know it did for me. I never expected to lose anything other than my constant D on the diet and had no idea it would also clear up so many of my autoimmune mediated issues that the doctors had mainly said 'learn to live with it' about.

I agree with everyone else....

A gluten-free diet is not in ANY way harmful, you cannot damage yourself being gluten-free .... BUT not being gluten-free you can...

Meanwhile you have other worries... perhaps founded, perhaps not? However nothing is stopping you going gluten-free...

False +ve serology is rare, false negative biopsy is common ... further you were several weeks gluten-free which means if the damage was just starting to get out of hand then the chance of a positive biopsy decreases while on gluten-free diet... to the point where if you do it well enough for long enough the biopsy should be negative (but you are still celiac)

Go gluten-free and throw in casein free as well and get the blood tests redone.... if they stay high then your Dr. will need to explore further but if they drop you have your answer.


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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Welcome aboard, Mike!

I'm not a doctor, so I can't rule OUT anything. But if you are making antibodies to gluten, you should not eat gluten. If you made antibodies to peanuts, nobody would dream of telling you to keep eating peanuts!

But every problem you describe as already been described on this board by people whose symptoms totally disappeared on a gluten-free diet, so I believe those problems are all symptoms of celiac.

Rheumatoid arthritis can be CAUSED by gluten and casein, which explains why we see high anti-ttg in RA patients--RA doesn't cause high anti-ttg, it's the other way around.

Gluten intolerance (and often casein intolerance) causes RA.

It also either causes or exacerbates Raynaud's.

It also causes low B12 and anemia (because of poor absorption of nutrients because of damaged villi).

It also causes neuro problems, sometimes severe.

As the above poster pointed out, 5 weeks off gluten is enough to let damaged villi heal, and your doctor should have known that and told you that before ordering the biopsy.

Most of us on this board had to at least temporarily go off dairy as well as gluten. Many of us were able to add it back to our diets after our villi healed (a couple of months on the gluten-free diet, sometimes more). I've seen quite a few articles linking dairy (as well as gluten) to RA, so I would suggest you give that a try.

Are your symptoms improving at all on the gluten-free diet? You might want to be sure to either avoid or go very light on things like gluten-free breads, cookies, cakes, etc., until your gut is fully healed, as those products are very tough for a gluten-damaged tummy to digest (it'll feel like you swallowed a brick).

If you have no relief from your symptoms on a really strict gluten-free diet, you might want to look into other possibilities, such as Lyme Disease (there are several members of this board who have been diagnosed with Lyme), mercury toxicity (more common than you'd think), and Candidas (a systemic yeast infection common to celiacs).

But in the meantime, being strict with the gluten-free thing is often tough for newbies. Most of us here have been shocked to find gluten in the most unexpected places, such as:

Rice Krispies

Corn Flakes

deli tuna salad (contains bread crumbs)

"lite" ice creams

Soy sauce (most brands, but not all)

medications

envelopes (the sticky part you lick--don't lick any more)

surimi (fake crab stix--most brands contain wheat starch)

Rice Dream rice milk (says gluten-free on the box and ISN'T :ph34r: )

There are lots more possible pitfalls. Others will probably weigh in with them,

Lotsa luck! And ask lotsa questions--this board is a great resource!

Thanks for your advice,

It was sort of my fault that I was gluten free before the biopsy but the hospital also stuffed up by sending the letter regarding the endoscopy to the wrong address so I missed it the first time,I have had trouble with the medical system here in New Zealand and with doctors telling me it is all in my head.I actually did some research and after eating and drinking a fairly large amount of gluten one weekend told the doctor to do a blood test for Celiac because I thought I had it.

I have been gluten free for 4 months now and totally dairy free for 2 months(very little 2 months before that,a small amount of cheese and natural old fashioned yougurt) and mostly eat fresh meat,fruit and veges.All meds and vitamins are gluten free.I think I am allergic to ibuprofen because I have coughed up and had bloody stools and get sweaty after taking it,and have even found out that people with sinus polyps shouldn't be taking it.

My neuro problems flared up when I had the flu and once when I had an eye infection which makes me believe I have MS but from what info I can find high tTG doesn't occur with MS.It seems really hard to find info about tTg with other disorders as what I can find mostly relates to celiacs.

I have also heard that the higher the tTg level usually means the greater the intestinal damage,I had 14 times the normal limit and find it really hard to believe that there is no major intestinal damage of villi.I had b12 injections and sublingual pills before the biopsy because we thought that may have been a problem due to bad absorption,that didn't appear to make much difference.

My frequent mouth ulcers have completely disappeared which could be from going gluten free or the b12.I do think there is more than one problem with me though.

I will probably get the anti tTg blood test redone tomorrow out of interest as I have been gluten free for a while now and Im still trying to get a booking with a gastro specialist.

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Thanks for the advice,

It was sort of my fault that I was gluten free before the biopsy but the hospital also stuffed up by sending the letter regarding the endoscopy to the wrong address so I missed it the first time,I have had trouble with the medical system here in New Zealand and with doctors telling me it is all in my head.I actually did some research and after eating and drinking a fairly large amount of gluten one weekend told the doctor to do a blood test for Celiac because I thought I had it.

I have been gluten free for 4 months now and totally dairy free for 2 months(very little 2 months before that,a small amount of cheese and natural old fashioned yougurt) and mostly eat fresh meat,fruit and veges.All meds and vitamins are gluten free.I think I am allergic to ibuprofen because I have coughed up and had bloody stools and get sweaty after taking it,and have even found out that people with sinus polyps shouldn't be taking it.

My neuro problems flared up when I had the flu and once when I had an eye infection which makes me believe I have MS but from what info I can find high tTG doesn't occur with MS.It seems really hard to find info about tTg with other disorders as what I can find mostly relates to celiacs.

I have also heard that the higher the tTg level usually means the greater the intestinal damage,I had 14 times the normal limit and find it really hard to believe that there is no major intestinal damage of villi.I had b12 injections and sublingual pills before the biopsy because we thought that may have been a problem due to bad absorption,that didn't appear to make much difference.

My frequent mouth ulcers have completely disappeared which could be from going gluten free or the b12.I do think there is more than one problem with me though.

I will probably get the anti tTg blood test redone tomorrow out of interest as I have been gluten free for a while now and Im still trying to get a booking with a gastro specialist.

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I have the same sort of situation. Four weeks gluten-free and was told on friday that the biopsy was "normal". I saw on the report after the procedure that they said they saw scalloping. I can't find anything that says you'd have scalloping w/o damage and I can't find any studies that actually say villi regrow in this amount of time. I've only found stuff that say 3-6 months.

I don't see my doc until sept so I won't see the actual report until then. sigh.

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My anti ttg result has come through, it has dropped from 223 to 153 after four months of being gluten free.Looks like I do have celiac.It will take a while for those results to drop down to an accepltable level.

My sinuses feel blocked up again and Im starting to get numbness and muscle twitching/weakness again.Maybe this will stop when my anti ttg gets lower? I'm still thinking I have MS though.

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I'm not saying that you don't have MS (though I hope for your sake that you don't)--only that there is a strong correlation between MS and gluten and an even stronger one between MS and Lyme disease. I think it IS possible that MS might be caused, triggered, or exacerbated by the spirochete responsible for Lyme Disease, and that those with celiac are at greater risk somehow. I also think that vaccines play a role, but am not quite sure exactly how they fit in.

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You'll find a few of us on here who were told they had MS. I was given a tentative diagnosis the same time they discovered my low b12. I took injections for three years before the symptoms like you describe mostly went away. The nerve damage from low b12 can take quite awhile to repair. Sadly for some, it never completely heals. You may very well NOT have MS but just need time to heal on the gluten free diet.

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You'll find a few of us on here who were told they had MS. I was given a tentative diagnosis the same time they discovered my low b12. I took injections for three years before the symptoms like you describe mostly went away. The nerve damage from low b12 can take quite awhile to repair. Sadly for some, it never completely heals. You may very well NOT have MS but just need time to heal on the gluten free diet.

I am one of those who was thought to have MS. The fact that your symptoms are excaberating after an illness is a good sign that it is celiac related, but no guarentee. What they are saying about the B12 is right also. Many with celiac can have numbers that are falling but still not out of the 'normal' range. That does not mean the body can make any use of it. Also if you take supplements with folic acid or eat many foods that are fortified with folic acid that will give a false 'everything is okay with the B12 levels' on blood tests. Nerve damage can take a long time to repair and if you have something called gluten ataxia (a feeling of being off balance constantly) that can lead to thinking that MS is a likely cause. Like with MS gluten ataxia can have good days and bad days and many of the other nerve issues will also wax and wane for a long time before they become permanent. The ataxia can take years to resolve once you get gluten-free and may not resolve completely but if that is an issue it should improve quite a bit.

If MS is thought to be a firm possibility your doctor should order not just an MRI but also a spinal tap. The demylinating lesions in the brain will produce debris in the spinal fluid that is diagnostic of MS. I would give the diet a real good shot though for a few months with your TTg levels I have the feeling after 6 months or so strictly following the diet the correlation with gluten will be obvious. Do avoid gluten grain alcohols and vinegars also at first as us neuro folks often can not handle them like the folks who are primarily gut involved.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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HERE IS A SUMMARY OF THE LAST FEW YEARS-

MAY 2007-broken collar bone during sport

JUNE 2007-tingling in hands and feet at night

gum bleeding and infection.

NOVEMBER 2007-B12 blood test of 400(200-1200normal)

DECEMBER 2008-numbness in hands and feet and worsening neuro problems

negative spinal and brain mri for MS.Neurologist tells me there is nothing wrong and suggested meds for anxiety(I refused)

Stopped drinking alcohol.

FEBRUARY 2008-Have had weight loss down from approx normal of 65kg to 61kg

APRIL 2008-high anti ttg 223-Celiac?

Started gluten free diet and stopped eating Dairy and red meat.Have aches all over and especially my collar bone-calcium levels near maximum.

Started taking multivitamins,fish oil,calcium/vit d,b12.

Really sore mouth ulcers on gums and mouth.

Undigested food often in stools.

JULY 2008-false biopsy-was gluten free for 5 weeks before

AUGUST 2008-sinus mri indicates deformity and my body is fighting an infection there every 2 weeks or so and eye infections-stopped wearing contact lenses.Need sinus surgery.Antibiotics,presidone and nasal spray don't seem to help.Stopped smoking marijuana.

Slight improvement of neuro symptoms on gluten free diet and I do have more energy.

Neurologist gives me an exam and says that I appear fine

Vitamin D blood test shows level of 63(50-150 is normal all though some regard 75 as the minimum),I had been eating salmon and taking vitamin d/calcium supplements daily for 4 months prior(approx 800IU a day).Started large daily doses of 2000IU a day.

Had 3 B12 injections(1mg) and daily sublingual b12 daily(1mg) for 3 months which took the level to 1250.

Anti-ttg dropped to 153.

Started fitness training again.

SEPTEMBER 2008-Started sinus flushing to try to stop sinus infections.

Mouth ulcers completely gone.

Very little undigested food in stools.

NOVEMBER 2008-Anti ttg only dropped to 140.

Gene typing test comes back positive for celiac(no known family history of it on either side of the family)

Started taking echineca to relieve sinus infections and changed diet to include very little saturated fats and refined sugar(was eating small amounts of dark chocolate or cookies,large amounts of nuts and a glass of lemonade daily prior).

Vitamin D level up to 111.

Broken wrist from sport-neuro symptoms get worse again.

Weight gain whilst going to gym 67kg

FEBRUARY 2009-neuro symptoms better as wrist is better.

Gastro specialist asks me to eat gluten so I can repeat the biopsy to confirm celiac as the last anti ttg result dropped very little.

Weight loss to 63 kg while not going to the gym.

ABOUT ME-I work outdoors and play sport outdoors,always been into keeping fit.

Was a binge drinker and now I don't really drink at all, and have been a marijuana smoker on and off for 5 years.

Never ever been able to put any fat on,only put muscle on when I train at the gym.

Have had a problem with white bread in the past so stopped eating it many years ago.

Have always had mouth ulcers.

Have always had solid but smelly stools and gas(little smell now after going gluten free)

Always had a huge appetite.

Have had more bacterial throat infections the last five years or so-due to the sinus infections

WHAT I THINK-

I have Celiac disease.

I had vitamin D defiency due to broken bones and low light levels(I live in New Zealand and work outside but spent 2006-2008 in Canada and lack of absorbtion of vitamin D fortified foods whilst there.)I have never been so pale in my entire life after spending 2 winters and a bad summer in Canada,I do have Croatian blood and from what I understand darker skin requires more time in the sun to obtain vit D.

I have MS(despite the neurologist saying I'm fine)but once my body settles down and I get rid of these sinus infections that is should go away.

Low B12 and vitamin D are possibly linked to MS? I have always been within normal range at least at the time of being tested though.

NOW-

I don't want to eat gluten for a biopsy.I feel a lot better without it but I realise that my anti ttg is really high still and didn't drop much,maybe I will need to put on medication for celiac?

I have only really just read up about glutamine and am possibly thinking I'm deficent in it?

Am I right that anti ttg attacks the glutamine in my intestine?I have also read that larger amounts of glutamine may be harmful to people with MS but what if I'm deficent of glutamine anyways?

Infections,stress,intense physical excercise,celiac and lower muscle mass(I do go to the gym when I don't have broken bones but I by no means have a large muscle mass) all cause low glutamine levels.I have all of these almost everyday.

Can intense excercise can make anti ttg decrease slower especially with a intial very high anti ttg of 223? The smallest drop in levels was when I was doing to most intense excercise.

Glutamine is transfered between the spinal fluid,liver and muscles and intestine.If I'm deficent in it my body must be going crazy with it moving all over the place more often than it should?

Im going to start a daily 10g dose of glutamine today and see what happens.At the moment I get it naturally from fish and chicken,maybe it isn't enough.I have just started eating beans but I don't eat eggs,cabbage or beets often enought to get it from that and I don't eat wheat and dairy at all which also has large amounts of it.

Does anybody have any thoughts or info about this?

Thanks.

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I am ignorant of the glutamine thing--sorry! I should read up on it, so I'm glad you brought it up.

I wonder about calcium/vitamin D deficiency for you? Which would make sense if you haven't been able to absorb anything. Seems like you have an awful lot of broken bones. Have they done a bone density scan?

Also, I think that high IgG levels take quite a while to come down. IgA and endomysial antibodies are supposed to be more celiac-specific. Did they test for those, or only for TtG?

I also thought it worth mentioning that fish oil capsules give me diarrhea--but fish doesn't.

One last thought--did you receive any vaccines just prior to all this? Some people--and I think those of us with celiac/gluten intolerance/leaky gut are more prone to this--develop terrible autoimmune problems as a result of vaccine reaction.

I would also agree with you that resuming gluten is tantamount to damaging yourself on purpose--but with no purpose! I mean, what would you do if the biopsy is negative? Go back to eating gluten? And what if eating gluten causes you pain and ill health? Your doctor wants you to do this?

Now if the doctor wants to do an endoscopy/biopsy to see what's going on, I'm all for it, but the idea of damaging yourself on purpose is just insane.

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Does anybody have any thoughts or info about this?

Thanks.

I have a lot in common with you. When I was diagnosed with celiac disease four months ago my tTG was >200, then I had it measured again after just over three months gluten-free and it was down, but still very high (132). Advice from my doctor (and other reading I have done) is that it can take quite some time to normalise.

When I was first tested for celiac disease (after my sister was diagnosed) in 2003, I had a positive blood test (don't know the numbers) and negative biopsy. From what I have read, if you get a positive tTG or EMA test and negative biopsy you'll go on to develop celiac disease (including villous atrophy) at a later stage anyway.

I also had recurring sinus and chest infections up until January last year, when my doctor ordered a CT scan and saw that a crooked bone was causing the problem. I had surgery and no problems since.


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A false positive on ttg is rare, but the numbers then are low as far as I can recollect. (a paper from canada)

Your numbers vere very high.

Blunted villi and increased IEL's are celiac, and the person interpreting the slide should have been told you were gluten-free for five weeks before this biopsy.....

Often, in such cases when diagnosis is difficult, they just run the gene test and if it is positive you get the diagnosis.

If the patient has been gluten-free, diagnosis is difficult. That is official. They should interpret your labs and biopsies in that light.

nora


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

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I had exactly the same problem, my results were so high that they were of the scale but my biopsy was completly clear, five different pathologists looked at the samples that were taken and none of them could find any kind of damage, and i hadnt even been gluten free. My doctors re-did my bloods and eventually went on that and scrapped the biopsy.

It is unlikely that your bloods were false, TTG is rarely raised in tests when people havent coeliac. My peadi said to me that there were a few possible reasons:

1) The coeliac is patchy - in some people the damage doesnt occur all over, but just in smaal patches of the intestine, this is common in people were its not very advanced and hasnt been active for long. Your doctor could simply have taken the samples from one of the clear patches, and/or not taken enough smaples to get a clear picture.

2) They didnt go far enough - they may simply not have gone deep enough with the camera, so were taking samples from the wrong place for you.

3) The samples got mixed up - this is very rare and unlikely to be the reason.

4) It has been inturpreted incorrectly (hence why my peadi had 5 pathologists look at mine). This seems the most likely for you, if you have blunted villi it is probably coeliac. Because you had been gluten free, the damage may have been less servere than they would expect it to be. They should take this into consideration, especially if you feel better on the gluten free diet - in which case i would reccomened you stay on it as many people consider the diet to be the best test there is. If you want a dead set diagnosis then genetic testing will give you that, even if you are gluten free.

Good luck, stay well.


"great works are performed not by strength but by perseverence"

 

Diagnosed coeliac - aged 14

                  Asthma

                 Osteopinia

                 High blood calcium

                 Crohn's disease -december 2012 

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I have a lot in common with you. When I was diagnosed with celiac disease four months ago my tTG was >200, then I had it measured again after just over three months gluten-free and it was down, but still very high (132). Advice from my doctor (and other reading I have done) is that it can take quite some time to normalise.

When I was first tested for celiac disease (after my sister was diagnosed) in 2003, I had a positive blood test (don't know the numbers) and negative biopsy. From what I have read, if you get a positive tTG or EMA test and negative biopsy you'll go on to develop celiac disease (including villous atrophy) at a later stage anyway.

I also had recurring sinus and chest infections up until January last year, when my doctor ordered a CT scan and saw that a crooked bone was causing the problem. I had surgery and no problems since.

My level dropped quickly between the first two blood tests but between the second and third it dropped a lot less for some reason.Did you have much in the way of neuro problems? I never had too many gastro problems apart from a burning feeling occasionally.

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I am ignorant of the glutamine thing--sorry! I should read up on it, so I'm glad you brought it up.

I wonder about calcium/vitamin D deficiency for you? Which would make sense if you haven't been able to absorb anything. Seems like you have an awful lot of broken bones. Have they done a bone density scan?

Also, I think that high IgG levels take quite a while to come down. IgA and endomysial antibodies are supposed to be more celiac-specific. Did they test for those, or only for TtG?

I also thought it worth mentioning that fish oil capsules give me diarrhea--but fish doesn't.

One last thought--did you receive any vaccines just prior to all this? Some people--and I think those of us with celiac/gluten intolerance/leaky gut are more prone to this--develop terrible autoimmune problems as a result of vaccine reaction.

I would also agree with you that resuming gluten is tantamount to damaging yourself on purpose--but with no purpose! I mean, what would you do if the biopsy is negative? Go back to eating gluten? And what if eating gluten causes you pain and ill health? Your doctor wants you to do this?

Now if the doctor wants to do an endoscopy/biopsy to see what's going on, I'm all for it, but the idea of damaging yourself on purpose is just insane.

The blood test came back positive for IgA and endomysial was detected and the gene test was positive.I was almost going to pay for a bone density test myself as they aren't too expensive, the gastro specialist said we would do one if the biopsy was positive.All my broken bones were from sport which may have broken if I was healthy.Having said that there was a few unusual things about the last break.I had no vaccines before the problems got worse,it got worse with the broken collar bone.I have had minor neuro problems and a burning feel occasionally in my stomache the last 10 years.

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IMHO you should have the bone density test, esp with the broken bones. You might save yourself a lot of grief in later life and best case senario is you find out its fine. Even with that, you'll have a baseline of your bone density for when your older.

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HERE IS A SUMMARY OF THE LAST FEW YEARS-

MAY 2007-broken collar bone during sport

JUNE 2007-tingling in hands and feet at night

gum bleeding and infection.

NOVEMBER 2007-B12 blood test of 400(200-1200normal)

DECEMBER 2008-numbness in hands and feet and worsening neuro problems

negative spinal and brain mri for MS.Neurologist tells me there is nothing wrong and suggested meds for anxiety(I refused)

Stopped drinking alcohol.

FEBRUARY 2008-Have had weight loss down from approx normal of 65kg to 61kg

APRIL 2008-high anti ttg 223-Celiac?

Started gluten free diet and stopped eating Dairy and red meat.Have aches all over and especially my collar bone-calcium levels near maximum.

Started taking multivitamins,fish oil,calcium/vit d,b12.

Really sore mouth ulcers on gums and mouth.

Undigested food often in stools.

JULY 2008-false biopsy-was gluten free for 5 weeks before

AUGUST 2008-sinus mri indicates deformity and my body is fighting an infection there every 2 weeks or so and eye infections-stopped wearing contact lenses.Need sinus surgery.Antibiotics,presidone and nasal spray don't seem to help.Stopped smoking marijuana.

Slight improvement of neuro symptoms on gluten free diet and I do have more energy.

Neurologist gives me an exam and says that I appear fine

Vitamin D blood test shows level of 63(50-150 is normal all though some regard 75 as the minimum),I had been eating salmon and taking vitamin d/calcium supplements daily for 4 months prior(approx 800IU a day).Started large daily doses of 2000IU a day.

Had 3 B12 injections(1mg) and daily sublingual b12 daily(1mg) for 3 months which took the level to 1250.

Anti-ttg dropped to 153.

Started fitness training again.

SEPTEMBER 2008-Started sinus flushing to try to stop sinus infections.

Mouth ulcers completely gone.

Very little undigested food in stools.

NOVEMBER 2008-Anti ttg only dropped to 140.

Gene typing test comes back positive for celiac(no known family history of it on either side of the family)

Started taking echineca to relieve sinus infections and changed diet to include very little saturated fats and refined sugar(was eating small amounts of dark chocolate or cookies,large amounts of nuts and a glass of lemonade daily prior).

Vitamin D level up to 111.

Broken wrist from sport-neuro symptoms get worse again.

Weight gain whilst going to gym 67kg

FEBRUARY 2009-neuro symptoms better as wrist is better.

Gastro specialist asks me to eat gluten so I can repeat the biopsy to confirm celiac as the last anti ttg result dropped very little.

Weight loss to 63 kg while not going to the gym.

ABOUT ME-I work outdoors and play sport outdoors,always been into keeping fit.

Was a binge drinker and now I don't really drink at all, and have been a marijuana smoker on and off for 5 years.

Never ever been able to put any fat on,only put muscle on when I train at the gym.

Have had a problem with white bread in the past so stopped eating it many years ago.

Have always had mouth ulcers.

Have always had solid but smelly stools and gas(little smell now after going gluten free)

Always had a huge appetite.

Have had more bacterial throat infections the last five years or so-due to the sinus infections

WHAT I THINK-

I have Celiac disease.

I had vitamin D defiency due to broken bones and low light levels(I live in New Zealand and work outside but spent 2006-2008 in Canada and lack of absorbtion of vitamin D fortified foods whilst there.)I have never been so pale in my entire life after spending 2 winters and a bad summer in Canada,I do have Croatian blood and from what I understand darker skin requires more time in the sun to obtain vit D.

I have MS(despite the neurologist saying I'm fine)but once my body settles down and I get rid of these sinus infections that is should go away.

Low B12 and vitamin D are possibly linked to MS? I have always been within normal range at least at the time of being tested though.

NOW-

I don't want to eat gluten for a biopsy.I feel a lot better without it but I realise that my anti ttg is really high still and didn't drop much,maybe I will need to put on medication for celiac?

I have only really just read up about glutamine and am possibly thinking I'm deficent in it?

Am I right that anti ttg attacks the glutamine in my intestine?I have also read that larger amounts of glutamine may be harmful to people with MS but what if I'm deficent of glutamine anyways?

Infections,stress,intense physical excercise,celiac and lower muscle mass(I do go to the gym when I don't have broken bones but I by no means have a large muscle mass) all cause low glutamine levels.I have all of these almost everyday.

Can intense excercise can make anti ttg decrease slower especially with a intial very high anti ttg of 223? The smallest drop in levels was when I was doing to most intense excercise.

Glutamine is transfered between the spinal fluid,liver and muscles and intestine.If I'm deficent in it my body must be going crazy with it moving all over the place more often than it should?

Im going to start a daily 10g dose of glutamine today and see what happens.At the moment I get it naturally from fish and chicken,maybe it isn't enough.I have just started eating beans but I don't eat eggs,cabbage or beets often enought to get it from that and I don't eat wheat and dairy at all which also has large amounts of it.

Does anybody have any thoughts or info about this?

Thanks.

Hello Mike.....I have a very short answer for you. Your blood work included the EMA (Endomysial) and that was detected. This test is 100% specific to Celiac Disease, meaning no other disease will cause a positive. That, coupled with your tTg, is 100% proof positive that you have Celiac Disease, never mind ALL the other stuff you have going on. A 5 week gluten-free diet will skew your biopsy results so.....congratulations and welcome to Celiac World! Your health is about to get a LOT better, as long as you follow a strict gluten-free diet.

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My level dropped quickly between the first two blood tests but between the second and third it dropped a lot less for some reason.Did you have much in the way of neuro problems? I never had too many gastro problems apart from a burning feeling occasionally.

I've had no neurological issues. My main issues were nausea and fatigue (like jet lag some days). The fatigue is still ongoing, but gradually improving.


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