Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Would Like Second Opinion On Test Results


nuttmegs17

Recommended Posts

nuttmegs17 Apprentice

Component ResultsComponent IgA Total 197 Transglutaminase IgA Autoabs < 4.0

I tested positive for Hashimitotos and was GLF for a few weeks to so not sure if this is accurate. I am going to see the celiac GI doc monday and perhaps he will run again.

But everything looks ok right? Just curious if I can safely rule our celiac -thank you!

Just curious if now I can just focus on hashis and not worry about gluten..


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

If you were gluten free or gluten light then that would make the tests a false negative. Even on a full gluten diet people can still show false negatives on blood tests. The only way to really fully rule out whether gluten is an issue is to take it strictly out of our diets for a couple of months. If you have been gluten free or gluten light make sure you let the GI doctor know this as before they will be able to test you need to back on a regular gluten filled diet for at least 2 months.

nuttmegs17 Apprentice

Yes i was on a gluten-free diet for about 3 weeks less than a month ago (getting fuzzy here, I've been lightheaded for several days now so forgive me). I was thinking it would come back negative (as I've heard people here mention that false negatives are common) I will be happy if i do not have it, but of course, if I do, i want to treat my body right...I want an accurate diagnosis. i found an adult celiac center at rush and they had a cancellation and will see me next week. hopefully he'll test for the full panel and I will let him know about the gluten-free period I had recently.

In any case, since i am now showing hashimotos , i will - even if i end up being negative for celiac - continue to demand testing yearly for celiac to keep an eye on it as it seems they go -hand in hand many times

also based on this board and other sites, it seems going gluten-free in general - or as much as possible (if i am not celiac), would perhaps help my hashimotos so i'm learning a lot from this.

Thank you!

mushroom Proficient

Why don't you do things the other way around? i.e., try the gluten free diet strictly for three months, and then challenge it for a week with a full gluten diet. If you do not feel bad after that week then gluten is probably not a problem for you and you wouldn't have to be worried, although you could still have an occasional celiac panel just to check. Since your tests were invalid and you have Hashimoto's disease, I think I would be inclined to be a little more proactive than passive about it.

nuttmegs17 Apprentice

I agree and in general i would be inclined to do that (diet and not procedure) but the new GI guy I saw (whom i really like), was highly suspicious of cleliac (he's an md at an adult celiac center at rush) but with my symptons is doing an endo where he is also going to look at other options (if it's not celiac).....i would like to definitly ruled in or out at this point, but am not dropping the hashi's thing. i have found what i hope is a good integrated health MD who will treat my hashis and thus, hopefully, get my symptons down. I actually am more inclined to think my gi symptons are related to hashi's than i am for celiac so am being a bit more proactive about that one, but not dropping celiac until i know for sure (basically i do not want to accidentily leave one untreated, as untreated - either can wreak havoc on your body and trigger other autoimmune problems - just another reason that if anyone is celiac and thinks about cheating they should consider the fact, that they may end up with more problems than another celiac episodes: they could trigger hashi's or graves!)

At the end of the day: hashis/graves/celiacs are something you should be on the look out for if you suffer from any of them. If they rule out celiac now, i will still request the yearly bloodtest to keep an eye one it. I will aslo run yearly tests for hashi's, graves to make sure one isn't about to swing out of wack.

I'm thankful for this board b/c i wouldnt have even known how to test to see if i had hashis! and bam: i finally have something to go on!

Immuniology is so complicated! my biggest time killer has been researching and seeking out docs who dont waste my time....After over a year, I am finally getting somewhere

ravenwoodglass Mentor

Please keep in mind that there can be false negatives with celiac testing even if we are still eating gluten. Do give the diet a good strict try for a couple of months after you are done with testing.

MsCurious Enthusiast

I agree and in general i would be inclined to do that (diet and not procedure) but the new GI guy I saw (whom i really like), was highly suspicious of cleliac (he's an md at an adult celiac center at rush) but with my symptons is doing an endo where he is also going to look at other options (if it's not celiac).....i would like to definitly ruled in or out at this point, but am not dropping the hashi's thing. i have found what i hope is a good integrated health MD who will treat my hashis and thus, hopefully, get my symptons down. I actually am more inclined to think my gi symptons are related to hashi's than i am for celiac so am being a bit more proactive about that one, but not dropping celiac until i know for sure (basically i do not want to accidentily leave one untreated, as untreated - either can wreak havoc on your body and trigger other autoimmune problems - just another reason that if anyone is celiac and thinks about cheating they should consider the fact, that they may end up with more problems than another celiac episodes: they could trigger hashi's or graves!)

At the end of the day: hashis/graves/celiacs are something you should be on the look out for if you suffer from any of them. If they rule out celiac now, i will still request the yearly bloodtest to keep an eye one it. I will aslo run yearly tests for hashi's, graves to make sure one isn't about to swing out of wack.

I'm thankful for this board b/c i wouldnt have even known how to test to see if i had hashis! and bam: i finally have something to go on!

Immuniology is so complicated! my biggest time killer has been researching and seeking out docs who dont waste my time....After over a year, I am finally getting somewhere

I think you're in very good hands at the celiac center, nuttmegs17. I would trust that they know what they are doing, and as long as you tell them about the 3 weeks gluten-free, they will know how to test and what to have you do to make sure they get a true diagnosis for you. Sounds like you're really on the right track with a good doctor now! :)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



mushroom Proficient

Just still be aware in all of this that you can test negative for celiac on the blood tests and the biopsy and still have gluten intolerance that needs to be treated with a strict gluten free diet.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

    2. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    3. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

    4. - SilkieFairy posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    5. - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748

    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.