False positive blood work?

Hi everyone, I recently have been getting over a bad salmonella infection that I was on 24 days of different antibiotics including flagyl for (confirmed in two different stool tests). I decided at the time since recovery has been so slow to test for IBD and celiac just in case. My doctor was very reluctant on doing so saying it is a waste of time and money but agreed to anyway so it would ease my mind. I wasn't actually experiencing any celiac symptoms, don't have any of it in my family, and had a fine stomach and digestive health prior to the salmonella infection. The celiac blood tests came back positive, my doctor was shocked and says it must have just been a false positive as there is no way I have celiac and says I have nothing to worry about. I was wondering what you guys thought, here are my results:

Total IgA 2.38 (0.69-3.82)
Deamidated Gliadin IgG 11.5 (<10)
Deamidated Gliadin IgA 5.5 (<10)
Transglutaminase IgA AB 16.5 (220)

I had routine blood work done including a check on my thyroid hormones that came back fine, oddly enough my TSH was transiently elevated during the infection but dropped back down to normal after it cleared. After my pleading the doctor agreed to send me to a GI only because she says I need a specialist to ease my mind and there is nothing wrong but I won't be able to get an appointment for a few months. Once again never had any symptoms before Salmonella.

Thanks for the help,

[toworryornottoworry]

Oops sorry there is an error in the original post, the Transglutaminase limit is also <10. Here are my vitamin levels that were deleted in the original post for some reason:

Ferritin 398 (31-300)
Hemoglobin 154 (135-170)
creatinine 95 (60-110)
Cholesterol 3.25 (220)

What do you guys think, is my doctor right or did I just happen to catch celiac before it took affect on me? I spoke to another doctor for a second opinion who claimed my AB levels would have to be at least double for celiac to be considered. If you guys need any more test levels let me know, I have been tested for pretty much everything under the sun in the past couple of months and have all my results on hand.

[toworryornottoworry]

Ok, this is very strange, for some reason it keeps cutting off my B12 levels and replaces the limit with Cholesterol levels, the top limit for Cholesterol is 5.20.

I will try this one more time :Vitamin B12 360, sufficiency is over 220

[achilles2]

Your b-12 is too low. The range is wrong. My friend's neuro said that many of her patients experience neurological symptoms with b-12 levels in the 500's. I try to keep mine around 1000. Are they looking at why your ferritan levels are out of range. As far as celiac I recommend that you go gluten free and see how you feel. (I usually tell people around 10-14 days) and then on the  15th day eat a lot of gluten and then see how you feel.  Also some people who cannot have gluten also have to avoid casein (protein in dairy). So you might want to also try the same thing with dairy, just separately so if you feel better avoid it know which one is the culprit.

My thoughts about the gluten test. the blood test is not very sensitive and misses a lot of cases so for you to show up positive more than likely means you have celiac. Can you find a good g.i. who will perform an endoscopy? It's not 100% accurate but it might give a better picture.

I hope this helps,
achilles2

[achilles2]

I forgot can you post your thyroid test results and if your vit d levels were checked those as well. Thank you.

[toworryornottoworry]

TSH 4.53 (.3-5.00) (elevated because of sickness)
Free T4 19 (12-22)
Free T3 5.2 (2.3-5.7)
Antibodies were negative.

What do you think of the test being 16.5 with the limit being 10? You speak of the B-12 ranges to be inaccurately low and from what I read anything under 20 for TTG is not at all indicative of Celiac. Do you think the celiac antibody level ranges were also too low in my lab? Both doctors still don't think I should be given an endoscopy as they feel these levels show nothing and could be transiently elevated due to recent severe bacterial infection, I am really not sure what to believe. I am asking for it anyway so we can have a confirmation to rule it out.

The high ferritin levels is something that seems to run in my family, we all have it. Also I had an ultrasound over my entire abdomen that showed nothing either than some extra fat on my liver (mild fatty liver?) that I need to lose weight to reduce.

What would symptoms of vitamin B-12 deficiency be?

[achilles2]

You said that celiacs does not run in your family. Does your family have any history of autoimmune issues such as rheumatoid arthritis, MS, lupus, hashimotos, diabetes etc....?
B-12 info:
http://www.b12-deficiency-symptoms.net/

If you cannot get in to see a g.i. I recommend that go gluten free. Also do you like sauerkraut (must be organic), kimchi, kombacha, this are fermented food and would provide a good amount pro-biotics. If you can get some good organic bananas, jicama, asparagus these have pre-biotics which is good food for the pro-biotics.

Hope this helps,
achilles2

[toworryornottoworry]

No autoimmune diseases at all in my family, there is diabetes although I have already been tested for that recently. I really have absolutely no interest in going gluten free as I don't have celiac symptoms and unless I have a confirmed case of it do not want to put myself through that for no reason. I do have a GI appointment that my doctor scheduled me after I pleaded her to. I have been taking probiotics to help regain my digestion after salmonella which has been improving lately.

[bluefeather]

You and I are in a very similar situation.  I found the following link helpful. Basically it says that infection CAN cause some of the same antibodies that trigger a positive Celiac blood test and that the antibodies can damage villi. So in that situation both the blood test and endoscopy would come back positive and you wouldn't necessarily be Celiac.  Personally, I plan to wait a year and have another blood test when I am feeling fully healthy.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2810390/

[toworryornottoworry]

Hi bluefeather, thanks for the response, I too have seen that article. My doctors do believe this is definitely because of the infection and not celiac, what kind of infection did you have? What antibodies came back positive? What made me suspicious of it is that I don't get sick after eating gluten so it simply would not make sense that I have it.

[silverfox67]

High ferritin levels usually mean Hemochromatosis  (I am a carrier and my iron levels get too high from time to time).  My grandsons have it.  - About Salmonella, I take 1 teaspoon of apple cider vinegar in 8 ounces of water daily to prevent it.  (Most alternative care doctors recommend 1 Tablespoon per 8 oz. water ).   Green tea can cause anemia, so I use it to chelate some of the iron from my system when I start itching or hurting too badly.  I am sorry that you have symptoms of celiac - and I sincerely hope you don't have it.  We must remember that doctors are "practicing" and don't always get it right.

[kevieb]

If you have a positive ttg tgest--you have celiac.  There are only about 2 other things that can raise Ttg levels--and neither one of them is very common--one of them would be if you had had an organ transplant.

I looked at that article and noticed that the test was done on only children and that it was done while they had an active infection, and also that it was only 9 children out of 222--and out of the 9 children, one was diagnosed with celiac and 2 others carry the DQ8 gene which is seen is only about 2-3% of people with celiac--bet those kids will eventually end up with celiac.

this was a one time study with out really high results of infection causing Ttg antibodies----and it used to be thought that children outgrew celiac because their symptoms would disappear in their teens---only to return later--they never really outgrew it, it just became silent and damage was still done.  It is an interesting study--but It seems like you are putting a lot of hope in one small test with very small results.

Celiac often sets in after an infection or virus, or some other kind of stressor.  i have 3 girls with celiac--and only one of them got sick when she ate gluten, one of them got rashes, and the other one didn't get any symptoms.

While it is true that celiacs are often lactose intolerant from intestinal damage, your levels are still low enough that I would guess you probably would not have that problem--none of my girls did--and they all had numbers higher than you.

Every lab has different ranges for what they are testing, so saying that you must be under under 20 is not correct.

We also had no history of celiac disease in either of our families, but we took part in a celiac study, and discovered that my hubby and I and 8 of my 9 children all carry one of the major celiac genes.  also, if it is type 1 diabetes in your family, it is piggyback on the same gene as celiac.  i have a brother with type 1 diabetes.   We also have numerous autoimmune diseases in our extended families.

Is your infection clearedup yet?  If it is, you could always try going gluten free for 3 months, and then hae your Ttg levels testd again and see if they have dropped, then you could go back on gluten for about 3 months or so and have your Ttg levels tested again and see if they have risen back up.

[toworryornottoworry]

Hi Kevieb, thank you for your opinion but it is horribly wrong. To begin with, there are MULTIPLE issues that present with false positive TTG's including crohn's, liver diseases, infections etc... It is a tissue damage test that is far from perfect, a positive in that test alone means nothing because of how many other things could elevate it.

DQ8 is present in 30-40 percent of the regular population while less than 1 percent develop Celiac, so once again you are very wrong with the 2-3 percent. The elevated TTG would not clear up right after infection, these kids also had infections that had nothing to do with their intestines, it clearly says that this has happened in both children and adults before so they finally did a study. Of course it is not going to happen every time to everyone, the severity of the infection and other factors have a big hand in the issue. No one in the medical field thinks people outgrow Celiac, I have no idea where you are getting your info from.

It is type 2 and not 1 in my family, I already had a 8 biopsy endoscopy that resulted in a perfectly healthy result with no signs of any inflammation, I have absolutely no interest in revisiting the issue unless symptoms/issues crop up.

Thanks for your response but please educate yourself a bit more before you spew false info, it is people like you that make internet research difficult to do with all the spreading of B.S. Sorry if I come across as rude but I am sick and tired of all the internet know-it-alls I have encountered in my journey.

[toworryornottoworry]

And the blood tests were re-done, negative along with my biopsy if anyone else was interested.

[toworryornottoworry]

http://www.ncbi.nlm.nih.gov/pubmed/17894023

Another article on random autoantibodies being elevated during infection. If you do not know that infection produces transient and low titres of auto ab's then you need to stop giving medical advice because it is simply misleading. Your family seems to have a lot of autoimmune, my mother has 8 siblings, none of which have any autoimmune, same with my dad. Both have large families with zero A.I's in it.

[silverfox67]

Hemochromatosis can cause liver damage/problems.  EDTA can help chelate some of the iron out of your system.  I buy it online - but most doctors prefer IV chelation.  I just take EDTA once a month to keep my iron levels down to "normal".   My ferritin levels have been good for the last two years.

[kevieb]

http://celiacdisease.about.com/od/celiacdiseaseglossarygl/g/Hla-Dq2.htm

DQ2 is present in 30% of the population

I Have 3 children with celiac disease, we have been dealing with this disease for 8 years.  We have also been part of a celiac study done through the university of california, Irvine.  My husband and myself and 8 of my 9 children are all positive for the DQ2 gene.

two of my celiac children have left home, the youngest of the 3 graduates this year.  When my children were diagnosed, many adult doctors were not even aware or the Ttg test, and it was the most accurate test available.

I am willing to admit that i knew of only 2 other things that could cause a positive Ttg, but I'm not spewing out false info.  The link I posted tells that DQ2 is the most prevalent gene over DQ8.   Even though multiple other things may cause a positive Ttg---I don't believe it happens on a large scale and you also said infection can caus l LOW titres or transient antibodies.

You also never mentioned that you had blood work redone and a negative biopsy--which of course does not necessarily mean anything since the scope can only get into the intestine about 6 ft.

I will remodify my former statement, if you have a positive Ttg, it is most likely you have celiac disease, and a lesser chance that you might have something else----especially if your numbers are high.

It is also believed that there are more genes involved in celiac that they haven't identified.  There were at least 6-8 people with positive celiac biopsies in the celiac study we were in that did not have either DQ2 or DQ8

It was believed at one time that children outgrew celiac disease--maybe you need to educate yourself on a little celiac history.   Also, i said it is 2-3% of CELIACS that have the DQ8 gene--not 2-3% of the population.

One of my daughters also had an endoscopy with biopsies that showed no celiac damage--but she definitely has celiac.  Also, Milk protein allergy can cause intestinal damage that looks like celiac.

I also had a biopsy once and was told that I had celiac, but all the terminology was different than what had been used with my girls, plus, the area they biopsied was not the normal area---I did a little research and discovered that taking NSAIDs could cause damage that looked like celiac in the duodenum-----I had been on a lot of NSAIDs and had recently had a Ttg test that was clear.

The following year I had a scope with biopsies that showed no damage.

I'm pretty well educated on celiac because I had to be---just because i got the number of diseases wrong that could cause Ttg antibodies besides celiac doesn't mean I am spewing out false information.

I think you had better recheck a little bit of your information, also---especially before being so rude to someone who has been dealing with a disease for years that you just started asking questions about 5 1/2 months ago.

I notice that achilles2 told you the same thing about a positive Ttg meaning you most likely had celiac---yet you didn't drag her through the mud.  

Don't know what you've got against me, but I'm pretty well educated about celiac disease---and i now know that there is a small possibility that several other immune diseases and some infections can cause low titres of Ttg antibodies that are only transient.

[toworryornottoworry]

Kevieb, you are right, I was overly rude and I apologize, you simply caught me at a bad time. The difference between your response and achillis that triggered my response was your absolutely self-assured response of “if you have an elevated ttg, you have Celiac.” Achillis was a bit more diplomatic in her response and made sure to state it was in her opinion. She also responded much earlier and before I had much knowledge myself. I also have been in similar arguments with other people prior to educating them on the process, so I suppose my patience has run thin for those who don’t look into specific things before making such statements.

Doctors always tell us to stay off the internet when it comes to things like this and the reason why is because of responses without a background basis. I was confused as to why you would respond that infections and many other diseases cannot cause these transient elevations without doing a simple google search to prove that is wrong. The internet would be a great place for medical research if people were more responsible for the information they spread, it is well known that multiple issues cause false positive TTG, in type 1 diabetics the test can provide false positives 20 percent of the time.

Having kids with the disease does not necessarily mean anything when it comes to knowledge of the actual pathogenic process. I have a friend who contracted hepatitis C from sexual intercourse and thinks that his is autoimmune and gets angry when told otherwise, is he right because he has the disease? No. I simply just hope that you can understand everyone’s situation is different and although you do have a good grasp on the disease because of your children it does not mean you know everything about the tests and the pathogenic process created in the intestines.

I understand that Celiac can develop at any time with a trigger to the associated genes, however this is a very slow process and the elevations would usually not be noticeable during the infectious illness. When this happens symptoms do not resolve and keep getting worse and worse. Although at the time of the blood tests and posting this thread I was still feeling sick, I am now fully recovered.

The children outgrowing Celiac was not a wide spread belief, just because a few doctors thought so doesn’t mean it is wide spread belief in the medical industry.

[kevieb]

http://books.google.com/books?id=t4qKPLsRjcAC&pg=PT330&lpg=PT330&dq=when+did+doctors+believe+that+you+could+outgrow+celiac+disease&source=bl&ots=g1bsINMjri&sig=0ZKpQUtbXTX0AgkMvkAiFx0i5J8&hl=en&sa=X&ei=1u5BUZH7MdO5qQH26IB4&ved=0CHUQ6AEwCQ

I wasn't wrong when I said it was a wide spread belief that doctors thought children outgrew celiac.

I appreciate that you apologized to me.  I also appreciate that you educated me a little more about the fact that there are several things that can cause positive Ttg antibodies---although I did notice that it usually was a low titre of antibodies, and that they were transient, and usually were tested because a person was sick with something else.  Under those circumstances, it looks like it would definitely be prudent to wait a bit and be retested before doing anything to your diet.

  When my children were diagnosed, the basic belief was that if you had Ttg antibodies, you had celiac disease---I think that statement probably still holds somewhat true, if it is changed to saying if you have a HIGH level of Ttg antibodies you most likely have celiac disease.

Over the years I have periodically gone online just to see what updates there were about celiac disease---as my children have left home, and i only have one celiac child at home (who follows her diet)  I have not looked for updates on celiac as often as I used to.

I have tried to stay up to date on the pathogenic process of celiac BECAUSE I have children with it and because I know that most of us could get it at any time.  I have even been allowed into the surgery to watch a biopsy on one of my children when they were testing her for celiac.

Obviously I fell a bit behind on my efforts to keep up--so I have you to thank for helping me know more--so I can help others know more.

I can remember being very frustrated when my children were diagnosed because it was right about the time that gluten free became a "Fad".  In one way, it helped, because there were more gluten free products becoming available, but in other ways it was frustrating because people didn't understand that what my children had was a genetic autoimmune disease and not an allergy, and that some doctor did not just randomly throw the diagnosis out at us without testing.

I had a doctor's wife once ask me if my kids got sick when they ate gluten---when I told her they did not (one actually did)  she told me that they might not have celiac because it was a really popular diagnosis right then.  I explained to her that we did the proper testing.(we also tested them every 6 months, so it was obvious when we could see their levels rise and fall according to how well they followed the diet) i remember thinking "no wonder it is so hard for people to get diagnosed."

I think we had the first children in our little town to be diagnosed with celiac, that I was aware of.  I'm pretty sure the hospital lab had never run a Ttg test before we brought our family in.

I keep hoping that the medication that Dr, Alessio Fassano is working on will become available---and work in the way they are hoping it will work for people with celiac disease.  It is a zonulin antagonist.  People with celiac have more zonulin in their small intestine, and it is what holde the "gates" open and allows the gluten particles to get into the blood stream.  I think that is the basic idea of how it is supposed to work.

Last time I looked it up, it had been, or was in the second phase of human trials---I think they were also trying to fast track it with the FDA---but I haven't looked it up for awhile---so I might be missing something.

so---friends?

[CalGal]

It's really nice to hear people 'coming together' and exchanging information about gluten issues. This subject is near-and-dear to my heart. I see so damn many individuals who got short-changed by the medical profession when those patients are dealing with gluten issues. We just don't know enough yet about celiac disease or about gluten sensitivity (non-celiac gluten sensitivity, NCGS) which can be just as miserable in some individuals..

I just read the other day that some with gluten sensitivity - a whole 'new' category of gluten misery - develop lesions in the brain (white spots!) and the article also seem to suggest they could be resolved with a GF diet..........I've ear-marked it to go back and do more reading this weekend.

So if I may...................................? Please 'kiss-and-make-up.' There's a whole wide world of people to try to help AND one heck of a lot of purported medical professionals to bring up-to-date, too.

[kevieb]

I talked to my sister in law today--she has 3 girls that tested positive for celiac--she seaid her own tests were negative--but was not sure if they had done a total IgA serum test.  She felt lousy eating gluten, so she has staye doff it.  She recently experimented and ate something with gluten on purpose--and felt lousy--she felt like it was a definite correlation.

If she wasn't tested to know whether or not she is Iga deficient--the test won't work, or she could have possibly been tested just as the disease was setting in--before there was a chance for anything to show up----or she could possibly have non-celiac gluten intolerance----this is not the easiest thing to diagnose.