Lab Results

[Mpug128]

Hello.

I am new to this.  I just wanted some advice on my results since my doctor put me on a gluten free diet for it and will then reassess.   I am not having symptoms other than anxiety.

Here they are:

GLIADIGA 93                   Range -<20

GLIADIGG 66                   Range-<20

IGA 184                            Range 70-400

TTG 102                            Range -<20

TTGG  3                             Range -<20

[cyclinglady]

Welcome!

Your doctor is not following diagnostic protocol for celiac disease.  You should be referred to a Gastroenterologist for an endoscopy to obtain biopsies.  Now, some must skip this step for financial reasons (lack of insurance) or long wait times (public health).  A GI can rule out concurrent issues like H. Pylori, SIBO, cancer (rare), etc.  you should remain on a gluten diet until all testing is complete.  

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[Mpug128]

Do you think I should come out and ask my doctor for an endoscopy? Can my results be higher numbers like above and me not have it? I have only been gluten free since Friday, but I almost feel like I'm having withdrawals or something.  I think I'm making it too hard.  It's overwhelming how gluten is in so much that you don't think about!

[cyclinglady]

It is up to you whether or not you should ask your doctor for an endoscopy.   Remember, you are the patient and a customer.  You do have patient rights.  If you do not feel comfortable advocating for yourself, bring a parent or friend with you or put it in writing.  Ask your doctor why he is not referr8ng you for a biopsy.   All the celiac experts recommend an endoscopy to help diagnose celiac disease.   Notice this algorithm shows just about everything leading to biopsy.

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Do not take just this advice from a lady in the internet.  Do the research and learn about celiac disease.   This is your life.  

Oh, the gluten free diet, will get easier, I promise.  There can be some withdrawal s6mptoms too but those should resolve quickly.  

 

[Mpug128]

Thanks for your input. I have felt an unease and more anxiety since my doctor called to tell me about the results. I don't want to have restrictions on my diet if I don't need them. I called to ask for a referral to GI this morning. I'm going to start eating gluten again until I talk with a specialist and get his/her opinion on what to do next.  You're right-it's my health, and I have to do what I feel is right for me.  I won't be at ease with this until I get a proper diagnosis.  If I find out I truly am celiac I will have to accept that and adopt the diet.  Thanks so much. Your information was helpful.

[Bree J]

Those lab results are higher than mine were and I still believe I have celiac, but I do not have the means to get a biopsy. Just as another person who's felt yucky and done a blood test to see why, I think you should avoid gluten. It may not be the auto-immune disease celiac, but it could be non celiac gluten intolerance, which mimics celiac very closely, it's just not a full body auto-immune reaction.

I'm NO doctor, but from personal extensive research I've done, your antibody levels seem to show that your body is attacking something and does not like it.

[Mpug128]

Thanks for your response. I guess I want to make sure that it isn't something else.  As much as it will be an inconvenience to go gluten free I will accept it once I can rule out other things or hear from the GI specialist first hand that it is celiac. My husband isn't too supportive with the whole thing.  I know it's because he won't research anything.  If I have it it's going to be hard, because he doesn't get why you can't "splurge" once in a while.  I want him to go with me to any procedure so that the doctor can explain it to him really well if I have it.  It would make life much easier for me if so, and if he truly understood:)

Bree J, you have symptoms then? The only one I really notice is anxiety and some acid reflux. The only reason I got tested is because my daughter tested positive for it, but it was a weak positive.  When I took her to GI they said they don't consider those numbers to be high. She is trying gluten free for a few weeks and then going to reintroduce gluten to see if there is an intolerance there.  

I just think I can accept it better if I go to GI and get an opinion there-just me, but I think I will feel better doing that.

Thanks so much for your response!

[Bree J]

Mpug,

Yes, about 4 or 5 yrs ago I went through minor trauma and was then intolerant to gluten. This happened to my father, his brother, and 2 of my paternal cousins. You don't have to have trauma for your gluten intolerance to become "un-dormant" btw.

Every time I ate it i would get horrible cramps that made me not be able to move. Nothing gave me relief at all. Constipation followed for days. So because of my family history I tried giving up gluten and was able to eat again.

Now, if I eat gluten because I can't stand not to taste the office donuts (this was 3 years ago, i know better now), one bite sends me into hell again. More recently, I ate fajitas with seasoning that must have had flour in it and the cramps and C came again.

I also have had pain in my joints (like bad growing pains, but I'm a female in my late 20s), weird raised rashes on my knuckles/hands, and anxiety. I don't think celiac caused my anxiety but they sure don't mix well, lol.

I got a blood test a few weeks ago without ANY gluten in my system (which is stupid i know, but no one told me!) And my IGA-TTG was fairly high for someone who didn't have gluten in them. Like I said before, your body is attacking something it can't handle/wants out based on those levels, and those levels are specifically tested for celiac. *shrug* If your daughter is gluten free, she could've gotten the gene from you, and yours is just now being active!

 

As for your husband-- my partner was apprehensive as well. I think taking him with you will help him realize, and help ease your mind! I just showed my partner my blood tests and the research I've done online and he believed me, for lack of a better word. But yeah it sounds like he needs a doctor to tell him how much a splurge on regular wheat noodles for example could really hurt you.

[cyclinglady]

Smart move on moving forward with the GI visit.  You have had strong positives on the celiac panel.  Your daughter?  I did not have a strong positive (weak for me) yet I had moderate to severe intestinal damage.   The celiac blood tests are for screening.  There was some thought that they could skip endoscopies for diagnostic purposes, but researchers/experts found that this step is still necessary and valuable.  I just attended a lecture by Dr. Sheila Crowe, President of the American Gastroenterologist Association.  Biopsies via endoscopy is still the BEST method of diagnosing celiac disease.  Someday, that might change, but not for now.  Research all the leading celiac experts and see what they say for yourself.  

 

[Mpug128]

Bree J, you mention trauma...Looking back about two years ago I had abdomen pain and bloating with weight gain, most likely from the bloat. I had a lump in my belly button-long story short it was thought to be a cyst or hernia. I had a CT scan, vaginal ultrasound, and colonoscopy, all of which turned up normal.  I ended up opting for surgery to remove the "cyst" only to find out I not only had a hernia but endometriosis that attached to my belly button, which felt like a cyst. What makes me think of this is that my surgeon told me that my symptoms were not from the hernia. I always wondered what could have caused it and now I am wondering if it was celiac.  I would've done anything back then for relief.  I ended up in physical therapy, which saved me! I wonder if this can happen sometimes where it can possibly flare up and then be okay for a while?