My test results scare me

[iBelieve]

I was tested for celiac 4 years ago and they said my number was 90 and it's positive. Months later I had s biopsy of 5 samples snd it showed no damage so the doctor said go back to eating gluten, you must be fine. I've been off and on gluten since. 2 months ago I was tested again and both my numbers read >250 and positive. The range is not supposed to be >12 or you're celiac. My doc said she has never seen numbers this high and can't believe I'm not in bed dying. These numbers scare me. Why are they so high? And I've only been eating gluten maybe once every week of so in the last couple of years. Why would the number go way up. When it was 90 I never even heard of celiac and had been eating gluten all the time everyday. Back then when I had my biopsy too I went gluten-free for 7 months after snd they retested and my numbers were still 60. He couldn't figure it out so he said I must no be celiac. 

It's been 2 months gluten-free and in getting tested again. I know it can take longer for the numbers to come down but I asked to see if they've moved at all because I'm paranoid with numbers THIS high. In so careful not to eat or cross contaminate myself but I don't really experience the bad symptoms so I can't tell. 

Meet woukd those 2 numbers be so high? I believe it's the tTG and deam- something ( can't remember what it's called). I had the kind of test done that rules out the igA Deficiency. 

Could this mean I have some other form of autoimmune disease? I've asked 2 docs now they both said no it's only celiac but both docs also don't know enough about it and say there's no need to ever test again and my numbers won't ever come to negative if I'm celiac and not eating gluten. 

I live in Canada and these doctors don't seem to know anything. 

[LookingforAnswers15]

Hi, sorry to hear about your test results. I think the number is high because you went undiagnosed and ate gluten for 4 years. I went undiagnosed for at least 3-4 years. When I was diagnosed, my IgG was 220, so it was close to yours. If you stick to a strict gluten-free diet, the number will go down, do not worry. It may take a year or longer but it will go down. Make sure to also pay attention to other non-gluten-free food that you eat. You might be (not necessary but it is possible) sensitive to soy, eggs, nightshades, dairy products, corn, processed sugars. You should start feeling better once your antibodies start  going down. To my knowledge (experience), we need to be retested every 6 months. If after a few months you do not feel better and start noticing other symptoms, ask doctors to consider other autoimmune diseases but at this point concentrate just on getting celiac under control. Celiac disease shares many symptoms with other autoimmune diseases so it is not uncommon for celiacs to worry about other autoimmune diseases. Also, realize that some of our anxiety comes from celiac. I honestly did not worry much about other autoimmune diseases until I began noticing other symptoms months after going gluten-free and not feeling better. Good luck. 

[iBelieve]

Thank you very much for the reassurance and kind words. It's a rather confusing time for me. I feel slot better knowing you had a high number as well  looking thru the threads everyone's else's seemed so much lower so it scared me  

I've checked the bloodwork I had done at my Naturospths  it was IgG deamidated Gliadin and IgA tissue translutaminase  both > 250  

my family doctor now is testing my IgA and TTG  what is tTG? Why is he now testing something different? 

When you say some are concerned of other AI's does that mean the celiac test could actually mean other AI diseases? This is what confuses me  blood sugar is blood sugar  vitD is vitD And they can't be anything else.  why could celiac bloodwork be something else? Perhaps I'm just really not understanding any of this  why would one doctor diagnose me then undiagnosed me  then another day once you're celiac the numbers show it will always be positive.  

I know I have been tested for some AI markers in the past where they have said were normal.  

The other strange thing is I've felt worse since stopping gluten. Is that normal? I now have gastro issues and mentally I'm a mess. Panic and anxiety a lot. Feeling like I have low sugars etc  I'm eating very well  I don't eat processed food at all. I don't drink. I don't smoke.  I don't take any kinds of medications.  Could this be my body adjusting to not consuming gluten? Anyone else felt worse for months after cutting out gluten?

 

[mommida]

I don't think I am the best at explaining test results.  Kind of guessing at your test question.

ANA is Antinuclear antibodies level.  This is a count of abnormal antibodies that can be attacking normal body tissue indicating an auto immune disease.

There is such a thing as gluten withdrawal.  In some individuals there can be an opiate like reaction when they eat gluten.

As far as having much more severe reactions to gluten after going gluten free.  Celiac immune system was reacting to every gluten meal, and was working over time getting overtaxed and weakened.  Cutting the gluten, the immune system has been resting and getting nice and strong until it has something to attack.  It attacks full force the next time that gluten is your system and most people definitely feel ill.

[LookingforAnswers15]

Glad to help if I can. Going through this has been one of the scariest and hardest things I had to go through in my life so having some amazing people on here explain things to me and calm me down helped a lot. I hope I can pay it forward. When it comes to understanding what each test means, I am not really good at that. Some members on here are extremely knowledgeable about these tests so I hope they will respond. If I remember correctly, I usually concentrate on IgA and IgG when I look at my celiac panel. IgA was also high for me but it went back to normal after a few months. IgG is the one that has taken some time to get down. I think it is down to 50 now. So, it has taken over a year to drop to this but it is still not in a normal range. I really do not worry about that much since I know I am 100% gluten free and hopefully it will continue to go down. I stopped eating out and I am the only one who prepares my food since the kitchen is not gluten free at home.

No, having celiac disease does not mean that you will have another autoimmune disease. Some say that autoimmune diseases run together since our bodies are deprived of some nutrients, but it does not have to be. The reason why I was afraid of other AIs (such as MS) is because I had muscle twitching, headaches, felt weak, joint pain, and according to my doctor at that time, these were not celiac symptoms (some of these symptoms celiacs also have regardless what my dr said and I was probably reacting to something because it stopped after i stopped eating processed sugar, dairy, soy, night shades). That is why I told you to pay attention if you are reacting to non-gluten free food so that you avoid it and do not have to worry about these crazy symptoms.

I felt worse after I began gluten-free diet. Your body is getting used to your new diet and trying to get better and going through withdrawal. I also have had anxiety, panic attacks, brain fog. Unfortunately, these seem to go with celiac. However, after some time on gluten-free diet, you should start feeling better. As I said in my previous post, if you do not feel better after a few months and you notice additional symptoms, then get checked for other AIs but even then it could be just celiac and your body still recovering. My advice would be to check it then if you can. Unfortunately, I possibly/most likely have other AIs so I have to get more tests done.

[RMJ]

Have all of your tests been done by the same lab?  Unlike blood glucose and Vitamin D, different labs have different units and different ranges for celiac tests so they can't be compared.

TTG and DGP are both celiac tests.  They are looking for different types of antibodies which may be involved.  They do NOT both have to be positive to indicate celiac.  One is enough.  Hopefully nvsmom will chime in with the explanation of the differences, or someone will quote her.

If you don't eat gluten your numbers can get to the negative range, it may just take a while.  I'm almost there after 3 years.

I hope you get some answers and feel better soon.

[iBelieve]

Thanks for the reply. Wow it can take 3 years for your celiac numbers to hit the negative range? I was told 6 months by a doctor at my first diagnosis 4 years ago. 

The labs that tested me in August was different than the ones testing me this time. 

[nvsmom]

Wow....   Your doctor is horribly ignorant.  Scary ignorant.  He did you a HUGE disservice  by telling you that you could still eat gluten after such a high positive result.  A false positive  celiac disease test is virtually always a weak positive test result.  In your case that would be a 13 or 14, not a 90 or >250.

Yes, false (weak) positives can happen, but with the tTG IgA (tissue transglutiminase immunoglobulin A) it only happens about 5% of the time.  When it does happen, it is usually caused by diabetes T1, crohn's, colitis, liver disease, hashimotos's or a serious infection such as Lyme. 95% of the time a positive meas celiac disease.

The deaminated gladin peptides (DGP IgA or DGP IgG) are also highly specific to celiac disease.  If you put the two tests together, that's a pretty sure thing.

take a look at the diagnosis section of this report on celiac disease by the World Gastroenterology Organization for more info:  Open Original Shared Link

Your biopsy, four years ago, was probably negative because you were gluten-free.  One needs to consume 1-2 slices f bread per day, or the equivalent, in the 2-4 weeks prior to the biopsy or results have a good chance of being negative.  Also six or more samples need to be taken to improve the chances that the a age s caught.  Celiac a age is often spotty, and up to 1 in 5 celiacs ends up with a negative biopsy.

You  may need to be patient for your labs to normalize.  My tTG IgA was >200 and then dropped to a high 30 after 6 months gluten-free.  At 9 months it still was abnormal (above 14 or 20 a they changed the normal range on me).  I retested at 2+ years gluten-free and it was down to a 4.  It takes a long time in some.

As for your current symptoms, it coul be withdrawal.  Soe feel worse before they get better.  Also, symptoms such as anxiety, neuropathies, ataxia and arthralgias can take longer to improve.  Often many months or up to a few years.  

Hang  in there.

[MomBTired]

I once got paranoid about my kiddos numbers, then as he was diagnosed with other autoimmune diseases, I was told to stop looking at the numbers and watch the symptoms. He's been totally gluten free for almost 2 years now but I was told his test would probably not get to normal limits because the other diseases affect that number. My son is one of the extreme cases though. He has struggled with gastro problems way before Celiac. If another doctor tells you that is isn't Celiac, don't eat gluten again, get another opinion.