Blood Test Results

[guest134]

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,am a 21 year old male, don't have any of it in my family, and had a fine stomach and digestive health prior to the salmonella infection. Some levels from the test came back slightly elevated, 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 (<10)

I have noticed that these seem to be very low reference ranges, from what I have read it is suppose to be under 18 or 20 for negative, any thoughts?

Ferritin 398 (31-300)

Hemoglobin 154 (135-170)

creatinine 95 (60-110)

Cholesterol 3.25 (<5.20)

Vitamin B-12 360 (sufficiency is over 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. Two doctors I have spoken to seem positive that there is nothing wrong but I wanted to get other opinions as obviously if gluten is harming my digestion and overall health it is something I would want to stop eating.

Thanks for the help,

[MitziG]

Your doctor is wrong. You in fact DO have celiac disease. You have TWO positive celiac tests, one of which, the deamidated gliadin, is VERY specific for celiac. What you will find is that few doctors are aware of the prevalence of celiac,m of how to properly test for it, and that the symptoms are many and varied...and in some cases, non-existent.

Most people who think they were asymptomatic however, find that when they go gluten free issues disappear that they hadn't realized were related. Things like fatigue, weight gain, acne, anemia, hair loss, allergies, eczema, heartburn....the list is endless.

So...what to do now. First, educate yourself. You need to be properly armed when you meet the GI because you can NOT count on him being anymore knowledgeable about celiac than the other doc you saw. If you want a formal celiac diagnosis, you will probably have to undergo an endoscopy and biopsy. Request that multiple (minimum of 6) biopsies be taken. Many take only 1 or 2 and as celiac damage is patchy, it is often missd.

Now, you still may not get a positive biopsy. That doesn't mmean you don't have celiac. Likely, the salmonella infection is what triggered the celiac. You can carry the gene your whole life, but the disease does not always become active unless something (illness, injury, pregnancy) triggers it. So, any damage you have may be very minimal. That is a good thing. You caught it early.

But the blood tests do not lie. Your body is producing antibodies to gluten. If you continue to eat gluten you will develop significant intestinal damage and long term health complications. Do not let an ill informed doctor tell you otherwise.

It is critical that you continue eating a normal diet until the biopsy is done. If you do have damage, it will heal very quickly on a gluten-free diet and can easily be mmissed. Once the biopsy is done, you need to be gluten free for the rest of your life. Regardless of whether the GI diagnoses you as celiac or not.

[nvsmom]

I agree with MitziG, you have celiac. There really are no false positive in those tests, just like there are no false positive pregancy tests; the tests are showing antibodies that most people don't have. You are under autoimmune attack.

The reference ranges are lower than average but labs vary and it's probably accurate for that type of lab test.

EMA is a very specific celiac test (linked to ttg IgA) that indicates damage in the gut is occuring. If you are in doubt, you could request that test. My doctor did not do an endoscopy on me because of my positive ttg IgA and EMA tests; that was conclusive enough for him.

My vitamin levels and blood work was all normal too, so that doesn't indicate a negative celiac test either. You might want to keep an eye on your TSH levels, and possibly check T4 and thyroid peroxidase antibodies, if there are any abnormalities since hypothyroidism and celiac can occur together.

I advise you to err on the side of caution and go gluten-free. Untreated celiac (not on a gluten-free diet) will cause a constant state of inflammation in your body, which stresses your body, and could trigger more autoimmune diseases in those more prone to them (as celiacs are). With hindsight, I now know that I had untreated celiac for my entire life which possibly led to developing more serious AI diseases; this all developed after 17-25 years of eating gluten when I should not have been... and I was mostly symptom free (some mildly annoying GI issues) and very healthy and athletic.

If you are having more tests done, continue eating gluten (2+ slices of bread a day) until they are done or it could cause false negatives, which unlike false positives are fairly common.

Good luck!

[guest134]

My free T3 and T4 levels for thyroid were perfect, my TPO antibodies were negative. The doctor said the reason my antibodies are elevated is because of my post infectious colitis, apparently inflammation causes an transient increase in those antibodies. They said that my levels were too low to be specific for Celiac and that often the inflammation of gastroenteritis causes these mildly elevated levels. They seemed so sure of it too. I am so nervous right now I have made myself sick, I really hope I don't have celiac and that these doctors are right. I have read many articles on this transient elevation and this is one that came up. Open Original Shared Link

It showed studies of people who had transient elevations that dropped in a year once the inflammation was gone. What do you guys think of those? Surely my doctors are not ignorant on this, especially the specialist who deals with this for his career.

[guest134]

There is also something else that makes me believe my doctors and doubt celiac, I feel better when I eat bread, carbs, pastas etc... I actually feel my worst when I go without eating for a while and after I eat something (with or without gluten, doesn't matter) I feel a lot better. They are redoing blood tests in 3-4 months to wait for my antibodies to go back to normal, I guess I will just go with the flow for now and see if they are right. Will update you guys when I know. I don't have symptoms of celiac so it's not like I am going to be suffering or generally in pain during the wait.

For those wondering, I was the one who suggested the celiac blood test along with many other autoimmune tests, this was the only abnormal result.

For the person who asked here was my thyroid results:

TSH 4.53 (.3-5.00) It is still going down, was elevated while I was really sick with salmonella

Free T4 19 (12-22)

Free T3 5.3 (2.6-5.7)

TPO and another antibody, I forgot the name- Negative

My TSH being elevated and then dropping as my doctors predicted is also what makes me believe my antibodies for TTG are only transient. I have read enough research to back that infections can do that so I guess the only way I am going to find out is by retesting in a few months.

[GottaSki]

Certainly no one can decide for you that you need to live gluten-free. The positive blood tests indicate Celiac Disease. It is possible that you are one of the very lucky few that discover Celiac Disease while still in it's early stage - it is rare and I can only tell you that if I tested positive for Celiac Disease at 21 - the past 26 years would have been quite different for me - even if I didn't believe the test initially I would have known where to look first when a myriad of symptoms developed and worsened with each passing year.

I encourage you to get re-tested. If you test positive again - either have an endoscopic biopsy OR trial removing ALL gluten.

I wouldn't wish Celiac Disease on anyone, but I do wish with all my heart that those of us with Celiac Disease would have the opportunity to improve our health with early detection.

Good luck to you

[nvsmom]

I'm glad your thyroid is looking good.

I agree with with Lisa and Mitzi, You have the antibodies so please be careful. At the very least, get retested in a few months...

The inflammation untreated celiac causes could create more health problems if left ignored. When I was a young kid I had a lot of stomachaches but by time I was a young adult, they seemed to have subsided quite a bit; I was pretty much symptom free for a few years. But in my late teens and 20's is when I devloped Thrombocytopenia (which almost killed me) Hashimoto's disease, and possibly another AI I'm having checked. If I could go back and be gluten-free, I would. It really is an easy lifestyle once you get past the first month and it's steep learning curve.

Best wishes to you in whatever you decide.

[guest134]

I'm glad your thyroid is looking good.

I agree with with Lisa and Mitzi, You have the antibodies so please be careful. At the very least, get retested in a few months...

The inflammation untreated celiac causes could create more health problems if left ignored. When I was a young kid I had a lot of stomachaches but by time I was a young adult, they seemed to have subsided quite a bit; I was pretty much symptom free for a few years. But in my late teens and 20's is when I devloped Thrombocytopenia (which almost killed me) Hashimoto's disease, and possibly another AI I'm having checked. If I could go back and be gluten-free, I would. It really is an easy lifestyle once you get past the first month and it's steep learning curve.

Best wishes to you in whatever you decide.

Yeah it is odd that I have antibodies, but 5 different doctors absolutely insisted it did not mean anything because of how low they were. The ones I spoke to said that the deamidated igg is so small that it means nothing, more likely than not a false positive, especially with the IGA in range. I also just realized that the endomysial or whatever it is was also part of the panel and shown as simply just "negative". The only number that meant anything to them was the TGG which has been proven to actually be elevated in post infectious scenarios, one of the veteran doctors I spoke to laughed and said "I see that all the time". At this point only God knows really, maybe salmonella did trigger something in me or maybe my doctors are right, only time and the next test will tell.

The bothersome thing about waiting for the next test is that I cannot have it for a few months as antibodies due to inflammation can stay around for some time so it just leaves me wondering for months whether or not I have celiac. Also it takes a while to see a gastro here in Canada so I am left in the dark wondering.

What made you guys go in and get checked? What were your levels at on diagnosis?

[ravenwoodglass]

False positives are so rare they are practically non-existant. I agree with the others. I would give anything to have been diagnosed before extreme damage was done. I am one of the unfortuanate 30% that show up false negative in testing. IMHO you are lucky to have been diagnosed before you got a signature like mine and so many of the other older posters here.

Please be aware that celiac can impact any organ in the body including the brain. So if you do choose to stay on gluten be aware that mood and learning issues, joint and muscle pain, headaches, acne and other skin issues, infertility and miscarriages in women, gallbladder and liver problems and more can result from undiagnosed celiac. For some of us the disease is 'silent' as far as GI symptoms are concerned and other organs can be severely impacted first.

[GottaSki]

What made you guys go in and get checked? What were your levels at on diagnosis?

I was 43 - had symptoms (gastro, fatigue, joint weakness/pain, weight increase with healthy diet/major exercise and many more) my entire life. No doctor of any discipline ever suggested Celiac Disease. The symptoms worsened each decade until I was so ill that I had a couple hours out of bed at the most each day and was bloating after meals so much that I looked very pregnant each evening, which was always better in the morning - it still took another year of testing (all in normal range except low vitamin D) for everything under the sun. Finally my primary called the other five docs in the group in to my exam room and I went over every symptom again and one said - "you have been tested for Celiac Disease, right?" I said "I don't think so, what is Celiac Disease?" tTG came back only weak positive, but was sent to Celiac specialist whom ran full celiac panel plus all nutrients. I was severely deficient in every nutrient and only slightly positive on all Celiac tests. Endo revealed severe to total villous atrophy - all biopsies came back positive for Celiac.

Trust me - do not dismiss a positive Celiac test no matter how many doctors tell you it is fine.

Since you mentioned you feel fine eating gluten there is no reason to stop or reduce it for the next several months - it is important to remain on gluten for all future blood tests or if you need an endoscopic biopsy. Get tested again - perhaps the doctors are right. If the next test happens to be negative I'd still keep Celiac in mind if you have health problems in the future. The stress your body has been under could be the trigger for Celiac Disease or it is possible that you had not yet developed symptoms - there are over 300 symptoms - most of which can be dismissed or treated to improve. Doctors treat symptoms, they don't often see a patient with neurological or rheumatoid symptoms and think Celiac Disease, but they should. In my case I had severe gastro symptoms, but I thought they were mild my entire life because I had nothing to compare it to -- if food always bothers you, you have no understanding of what it is like to not have slight stomach issues. I had many healthful periods of my life - that is - I thought I had many healthful periods of my life - I dismissed minor symptoms and doctors were dismissive of the symptoms I did bring to them repeatedly.

Again, I am not saying you that have Celiac Disease - just don't want your doctors to completely dismiss it. You could also have a genetic test - this can't tell you that you have Celiac, only whether you have one of the genes commonly found in those that develop Celiac Disease.

Good luck to you

[nvsmom]

What made you guys go in and get checked? What were your levels at on diagnosis?

I started looking into gluten intolerances a couple of years ago when we were starting to get my oldest son diagnosed with Asperger's syndrome; these kids sometimes have problems with casein and gluten. I was also reading wheat belly at the time and that convinced me that today's wheat isn't great for us so I slowly started cutting back on my grain consumption.

I mentioned in passing that my son has a few symptoms like I had with wheat so I was worried about him, and she gently encouraged me to look at myself for testing. I usually dismissed the idea because I'm not skinny with D or anything like that, but she finally convinced me that it's not normal to hurt after meals (now that I was eating less gluten, I could actually notice that my stomachaches were related to meals - go figure lol).

I don't find doctors helpful unless I want antibiotics, so I took a home Biocard test that my friend told me about. It was a faint positive (ttg IgA test). I then went into my doctor with my test and asked for a full celiac panel, so he (only) gave me a ttg IgA, EMA and IgA. My ttg IgA was >200 (reference range 0-20) and my EMA titre was 1:40. My lab tests were pretty high but I've had symptoms (which were dismissed) since babyhood. I then went back and asked for vitamin and TSH testing (on the advice of this forum) and found all my vitamin levels were great (unusual for a celiac) but I had hypothyroidism, which I've had tested in the past multiple times because I suspected it but my doctors told me it was normal (I found old lab results which showed they were less than completely honest with me.

So, I don't trust doctors when they say a lab is normal when it comes back slightly high or even on the high end of normal. They are just treating the labs and not the patient symptoms when they do that. If I had trusted my instincts when I was younger, and not allowed doctors to brush me off because I wasn't abnormal enough, I'd probably be healthier today.

[guest134]

tTG came back only weak positive, but was sent to Celiac specialist whom ran full celiac panel plus all nutrients. I was severely deficient in every nutrient and only slightly positive on all Celiac tests.

Trust me - do not dismiss a positive Celiac test no matter how many doctors tell you it is fine.

Again, I am not saying you that have Celiac Disease - just don't want your doctors to completely dismiss it. You could also have a genetic test - this can't tell you that you have Celiac, only whether you have one of the genes commonly found in those that develop Celiac Disease.

Good luck to you

What were your numbers exactly? Were they as low as mine? The doctors aren't completely dismissing it- they say they are elevated because of the post infectious inflammation I have and will be retesting to make sure. God I hope I don't have celiac, that would be extremely random as my stomach was fine prior and no one in my large, extended family has it.

What the doctors said is that if my numbers were about double, then it would be suggestive of celiac, but at the levels they are at it is due to something else, which they think is post infectious inflammation. Mind you I am still having stomach issues and the salmonella infection hasn't fully healed yet. Hopefully the GI will make sense of it all. It is weird that my vitamin levels are not only good but also elevated quite a bit. Another reason they are pointing to inflammation for the elevated antibodies is that my ferritin is high, which is another sign of inflammation.

I guess the point my doctors are trying to make is yes of course positive blood tests could be indicative of celiac but at a certain cut off level, when they are slightly elevated there is another cause whether it is another autoimmune disease or for my specific case, salmonella colitis. Something else interesting I read, they say that TTG has a 95 percent specificity but that percentage is based off of levels in excess of 100, and also are for specific reading methods that most labs don't use. This whole thing is just confusing and upsetting.

[guest134]

False positives are so rare they are practically non-existant. I agree with the others. I would give anything to have been diagnosed before extreme damage was done. I am one of the unfortuanate 30% that show up false negative in testing. IMHO you are lucky to have been diagnosed before you got a signature like mine and so many of the other older posters here.

Please be aware that celiac can impact any organ in the body including the brain. So if you do choose to stay on gluten be aware that mood and learning issues, joint and muscle pain, headaches, acne and other skin issues, infertility and miscarriages in women, gallbladder and liver problems and more can result from undiagnosed celiac. For some of us the disease is 'silent' as far as GI symptoms are concerned and other organs can be severely impacted first.

"This is the first study where anti-tTG have been shown to be produced temporarily during an infectious disease, independently of coeliac disease. Acute viral infections in children and adults have long been suggested to induce an autoimmune response, including generation of autoantibodies in which their titres are low and the autoimmune course transient"

"This accounts for the transient appearance of autoantibodies during mononucleosis. In our cases the anti-tTG disappeared, together with the anti-EBV antibodies, along with the children's clinical improvement."

"These findings indicate that anti-tTG should no longer be seen as a province of celiac disease, but might represent an immunological phenomenon depending on yet-to-be identified triggers (overexpression of the autoantigen, viral infection). Thus, autoantigenic challenges caused by infectious agents and/or inflammatory reactions during the lifetime could be responsible for the age-dependent increase of anti-tTG in the general population, as we observed among eight different healthy age groups."

[ravenwoodglass]

"This is the first study where anti-tTG have been shown to be produced temporarily during an infectious disease, independently of coeliac disease. Acute viral infections in children and adults have long been suggested to induce an autoimmune response, including generation of autoantibodies in which their titres are low and the autoimmune course transient"

"This accounts for the transient appearance of autoantibodies during mononucleosis. In our cases the anti-tTG disappeared, together with the anti-EBV antibodies, along with the children's clinical improvement."

"These findings indicate that anti-tTG should no longer be seen as a province of celiac disease, but might represent an immunological phenomenon depending on yet-to-be identified triggers (overexpression of the autoantigen, viral infection). Thus, autoantigenic challenges caused by infectious agents and/or inflammatory reactions during the lifetime could be responsible for the age-dependent increase of anti-tTG in the general population, as we observed among eight different healthy age groups."

I don't see a anti-tTG in your test results. Could be wrong though as I am not a medical professional. The two test results that I consider significant are bolded. The anti-tTG tests can be positive with other issues but not AFAIK the tests that I bolded.

Your test results from first post follow:

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 (<10)

Keep in mind also that reference ranges can vary for different labs depending on the test method they are using.

The choice of whether to go gluten free or not is only yours to make. If you do chose to stay on gluten just be sure to get retested periodically to make sure your numbers are not going even farther into the positive range.

[guest134]

I don't see a anti-tTG in your test results. Could be wrong though as I am not a medical professional. The two test results that I consider significant are bolded. The anti-tTG tests can be positive with other issues but not AFAIK the tests that I bolded.

Your test results from first post follow:

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 (<10)

Keep in mind also that reference ranges can vary for different labs depending on the test method they are using.

The choice of whether to go gluten free or not is only yours to make. If you do chose to stay on gluten just be sure to get retested periodically to make sure your numbers are not going even farther into the positive range.

The transglutaminase is ttg, it is just the short form for it. I myself am positive that the transglutaminase was due to infection, it has really been proven to be signs of many other things when in the range I am in and considering my TSH also shot up for a while and then went back down as my doctor said I have no reason to not believe that this is also the case when the 5 of them said so.

The only number that scares me is the Deamidated IgG, being at 11.5. Although there are studies that show it is very similar to TTG so I suppose if that was elevated the deamidated could do the same. My doctors looked at that result as not significant saying it is so close to the line that it does not mean anything.

Now obviously, if I DO have celiac I will go off gluten for life, there is no doubt about that. I just don't want to put myself through the misery and find out in a few years that I was wrong and this was just and transient rise due to infection.

And yes of course I am going to retest, I am not setting this aside like it is nothing and neither are my doctors, I have a trip to the GI being set up and they are retesting me in a few months to see if it goes down as predicted. I am going in tomorrow to ask for the genetic tests to see if I even have the genes to get celiac, that will definitely point us in the right direction for whether this is due to infection or if we happened to find celiac before it gave me symptoms.

Will update you guys whenever I get updates myself.

[GottaSki]

What were your numbers exactly? Were they as low as mine?

Different ranges, but yes mine were very low - my celiac doc was surprised by the severity of the damage during the first endo - my symptoms matched the endo, not the blood tests.

Weak Positive Range (20-30)

Positive Range (31 or greater)

tTG IgA 23

Gliadin Peptide IgA 21

Gliadin Peptide IgG 35

3 months gluten-free

tTG IgA 6

6 months gluten-free

tTG Iga 3

All subsequent follow ups over the past 3 years gluten-free have been lower than 5

Glad you are going to follow up. It is certainly not time to remove gluten for life - in fact make sure you keep it in your diet until all follow up work is complete!

[ravenwoodglass]

And yes of course I am going to retest, I am not setting this aside like it is nothing and neither are my doctors, I have a trip to the GI being set up and they are retesting me in a few months to see if it goes down as predicted. I am going in tomorrow to ask for the genetic tests to see if I even have the genes to get celiac, that will definitely point us in the right direction for whether this is due to infection or if we happened to find celiac before it gave me symptoms.

Will update you guys whenever I get updates myself.

Good to hear you are going to retest. I am assuming you are staying on gluten until then since otherwise you won't know if the numbers drop from being off gluten or because it was a false positive.

As to the gene testing please know that gene testing can not rule celiac in or out as they usually only test for the most common celiac associated genes and there are some of us who are firmly diagnosed without them. Although DQ2 and DQ8 are the most common and the ones they usually test for there are others that are also celiac associated like my very rare double DQ9.

[guest134]

I have a question for you guys in regards to celiac and height issues. Let's say a few months down the road we find out my doctors are wrong and I do in fact have the disease. I have always been pretty short and insecure about my height, my doctor said from a young age that I would grow up to be 6'4,6'5 because of the size of my uncles and other things. Well I turned out to be a small 5'11 and that has always bothered me, if this is celiac would I potentially hit a growth spurt when I eliminated gluten from my diet or is it too late for me? (I'm 21).

[ravenwoodglass]

I have a question for you guys in regards to celiac and height issues. Let's say a few months down the road we find out my doctors are wrong and I do in fact have the disease. I have always been pretty short and insecure about my height, my doctor said from a young age that I would grow up to be 6'4,6'5 because of the size of my uncles and other things. Well I turned out to be a small 5'11 and that has always bothered me, if this is celiac would I potentially hit a growth spurt when I eliminated gluten from my diet or is it too late for me? (I'm 21).

Your doctor can see if your growth plates have fused with a simple X-ray. If they haven't then you could see a bit more growth but most times by 21 the plates have fused. Some undiagnosed celiac males barely make it to 5' so if your plates have fused do try and take comfort in the fact that you at least made it to an average height for most of the population.

[nvsmom]

I hear you! My dad and uncle where professional football players; dad was d-tackle and uncle was a lineman. My brother and I both started out big. There is an old wives tale about doubling your height at age 2 and it's supposed to indicate your adult height... I was supposed to be 6' (I'm 5'8") and my brother was going to be 6'7" but he stopped at 5'10". He stopped growing by age 15.

There was a young guy(about 20?) on the boards a few months back who I think hit a growth spurt after going gluten-free for a few months. Search the forum, I think it's title was along the lines of "I wasn't expecting this". Sorry I can't remember more...

So yes, there is a chance you could grow if celiac has held you back, but you're probably near or possibly past the age when many men stop growing so if you wanted to see if a gluten-free diet would help, I wouldn't wait too long. Good luck!

[MitziG]

I know you don't want this- none of us did either. The reason everyone is being so insistent is because we have all "been there, done that." Yes, you would think a GI who specializes in diseases of the gut would know what he is talking about- but the truth is, few do. There is a lot of relatively new research on Celiac Disease that the vast majority of docs are in the dark about. Celiac isn't profitable. There is no pill they can prescribe. Therefore, they aren't being educated about the latest info by pharmaceutical reps. They just don't know. Those of us who have suffered have scoured every bit of info available...we KNOW.

Yes, your ttg could be elevated because of inflammation- possibly. But the DGP? Nope. Gliadin IS gluten. Your body is making antibodies against gluten. Period. If you can't accept that, get the EMA- I bet it is positive too.

As for feeling better when you eat gluten, that is typical. Many of us, myself included, craved gluten, and felt sick when we didn't eat it. Gluten has an opiod effect, just like a heroin addict feels better when they take a hit, it doesn't mean they need heroin, or that it isn't bad for them. I never felt sick after eating gluten- but I felt crappy fatigued all the time, and I had bouts of "IBS" type symptoms. I was only tested because my son and daughter were diagnosed. And I found out the reason I felt like death all the time. And now I feel pretty darn great.

None of us would wish celiac on you. But we can see pretty clearly what many can't, simply because of experience. In a perfect world, you could rely on your doctor totally to give you the best advice. But you are hearing from people who have been misled and failed by those same doctors, for years and years, before FINALLY finding out what the problem was. I hope you will hear what we are telling you.

[MitziG]

Also wanted to add...in regard to blood tests. The only tests my doc ran were the TTG IGG and TTG IGA. The IGG test was 6, a weak positive (less than 4 was normal) the IGA test was negative. Yet when I had my endoscopy the damage was so severe it was visible to the naked eye- dr dx me on the spot and said it was clear I had celiac for many years. Biopsy showed total villous atrophy.

Do not let your doctors tell you that you have to be highly positive to have celiac! Positive is positive. It is sort of like being a "little bit pregnant"!

[guest134]

I know you don't want this- none of us did either. The reason everyone is being so insistent is because we have all "been there, done that." Yes, you would think a GI who specializes in diseases of the gut would know what he is talking about- but the truth is, few do. There is a lot of relatively new research on Celiac Disease that the vast majority of docs are in the dark about. Celiac isn't profitable. There is no pill they can prescribe. Therefore, they aren't being educated about the latest info by pharmaceutical reps. They just don't know. Those of us who have suffered have scoured every bit of info available...we KNOW.

Yes, your ttg could be elevated because of inflammation- possibly. But the DGP? Nope. Gliadin IS gluten. Your body is making antibodies against gluten. Period. If you can't accept that, get the EMA- I bet it is positive too.

As for feeling better when you eat gluten, that is typical. Many of us, myself included, craved gluten, and felt sick when we didn't eat it. Gluten has an opiod effect, just like a heroin addict feels better when they take a hit, it doesn't mean they need heroin, or that it isn't bad for them. I never felt sick after eating gluten- but I felt crappy fatigued all the time, and I had bouts of "IBS" type symptoms. I was only tested because my son and daughter were diagnosed. And I found out the reason I felt like death all the time. And now I feel pretty darn great.

None of us would wish celiac on you. But we can see pretty clearly what many can't, simply because of experience. In a perfect world, you could rely on your doctor totally to give you the best advice. But you are hearing from people who have been misled and failed by those same doctors, for years and years, before FINALLY finding out what the problem was. I hope you will hear what we are telling you.

I did have the EMA, didn't notice it before, it was negative. I am not sure on the Deamidated, the doctors say it is insignificant at the level it was and is more than likely a false positive, also deamidated IgG is not 100 percent specific so there are other causes that could rise it. I will have to see with the next blood test if they are going down. Why was my Deamidated IgA negative yet IgG positive? I am IgA sufficient so wouldn't the IgA be the number to go after?

Also the other thing is that I was fine before Salmonella, I did not have these symptoms. I am going to get the endoscopy to see whether this is celiac or just the colitis.

I understand that some of you had the run around from your doctors, but you all seemed to be in very different situations than me. There is a reasonable explanation for my levels, you seem very stuck on that every case is the same and all doctors will act the same, this is clearly a complicated process that is not one size fits all. In chronic infection it has been proven that a lot can happen, even peoples free t3 and t4 can drop below normal levels during an infection.

If I came to the doctor and had these results without having salmonella colitis I would definitely look at these numbers in a different light. My vitamin levels are high normal, there is NO autoimmune disease in my large extended family, and I was fine before salmonella. At this point I really consider it 50/50 on what it is, only time will tell.

[guest134]

Did a quick look at the deamidated IgG test, it has a 74.4-86 percent sensitivity, going by that alone and the fact that the IgA was in range could clearly point to a false positive at the low elevation I had. Also It has nearly the same specificity of TTG, being not 100 percent meaning it could rise in other situations as well.

Once again only an endoscopy and further blood tests in time will tell. It is all up in the air right now.

[kiddo88]

For the person who asked here was my thyroid results:

TSH 4.53 (.3-5.00) It is still going down, was elevated while I was really sick with salmonella

Free T4 19 (12-22)

Free T3 5.3 (2.6-5.7)

TSH at 4.53 is NOT normal. This is about where mine was for a LONG time, but I def. have hypothyroidism. Finally someone put me on levothyroxin to just SEE if that could be my issue. It didn't make it go away, but did help- but if I don't have my levo I can feel it. Personally, I feel the best if my TSH is about 2-2.5

I know you don't think you have Celiac- but I wouldn't write it off. It took doctors years to find my hypo, which can be done with a very simple blood panel (along with my other symptoms.) We should not think that they would find a "hard to pinpoint" disorder easily, quickly or accurately. I have been going on 9 years with this "tummy troubles". I have been to so many doctors its RIDICULOUS. I finally had to take charge of my OWN health.

Doctors do great things daily, but they are not the be all and end all answer.