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

Positive Blood Test.....

wolfie

Recommended Posts

wolfie Enthusiast
wolfie
Posted

antigliadin IGG and antigliadin IGA both were positive....one was 50, one was 5....I don't know which was which. Dr and nutritionist both advised me to go gluten free. I have had IBS forever (or so I thought) and was somewhat pleased to figure out what the deal was. Dr asked if I wanted a referral to a gastro and I said okay, thinking it could only help. I went to the gastro today and she wants to do a biopsy to confirm Celiac. I understand the point, but she said I had to resume eating gluten now until my test on Jan 31. I was just starting to feel better.....in fact it is amazing how much better I do feel now as opposed to when I was eating gluten. I am very upset that she wants me to eat gluten again for this test. Is it really necessary? The blood test seemed to be enough for my PCP and my nutritionist.

Any thoughts are much appreciated. I am so thankful I found this site....there is such a wealth of information.

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

Celiac.com Sponsor (A8-M):


Guest nini
Guest nini
Posted

I never had the biopsy. The positive blood test and the positive dietary response were more than enough for me and my PCP... even my GI said that the biopsy wasn't neccessary with me. Listen to your body, if you feel better on the diet, stick to it. The blood tests are sufficient enough to dx.

floridanative Community Regular
floridanative
Posted

I agree with nini. Your positive response to the diet is your answer. I had a biopsy Wed. and the doc wouldn't put me all the way out even though I begged him too (just conscious sedation) and it was NOT fun. It was not painful but I could see the doc putting the tubes down my throat and I was so mad that he would not put me out. I would not have him do any test in the future needless to say. Most everyone here said you go to sleep for the test which is the way is should be. Oh well....live and learn.

tarnalberry Community Regular
tarnalberry
Posted

the "clinical" gold standard is a biopsy. though, just two weeks of gluten won't be enough for reliable results. but you ask "do I need it?". the answer is up to you. is what you know enough to convince yourself that you should stay gluten free for life? you are the only one who has to make this decision, and if you already have doctors who support you, that's even better. you may want to talk to the GI about this, if you think you'll be seeing him in the future, but realize that some doctors stick hard to the "biopsy required for a diagnosis" rule.

Rachel--24 Collaborator
Rachel--24
Posted

I agree with the previous posts. If you are satisfied with your diagnosis and dont think you'll be questioning it later skip the biopsy. It wont really tell you anything you dont already know if its positive...if its negative it could very easily be a false negative so you could go through the pain of eating gluten for nothing.

CMCM Rising Star
CMCM
Posted

Well, look at it this way: If you stopped eating all gluten and felt great as a result, and then if your doctor said your tests didn't show celiac disease so you can eat gluten and when you do eat gluten you get sick and feel terrible again, which way of eating would you follow? Wouldn't you rather feel better?

The only thing FOR ME that makes "knowing" important is that it really affirms in my mind that I MUST adhere to the gluten free diet to avoid intestinal damage and a higher risk of cancer at some point. Not knowing makes it easier to "cheat", which you absolutely should not do if you have celiac disease.

Frankly, when you look at all the health problems just in this country alone, all the digestive problems, diabetes, obesity (even in kids now), IBS and countless other things that are frequently associated with or misdiagnosed instead of celiac disease....and when you look at the astonomical increase in consumption of grains in our country since 1900, and how all the rise in heart disease etc. correlates with the rise in grain consumption since 1900, my conclusion is that probably no human digestive system handles grain very well, but some handle it better than others and some can't handle it at all, but basically, the message is clear to me: we should not eat gluten! No one should eat gluten!

If you haven't read "Dangerous Grains" and a few other similar books, it's very enlightening reading! The several books I read are what prompted me to get tested so I'd know for sure.

Carole

Nancym Enthusiast
Nancym
Posted

CMCM is absolutely right. Also Dr. Fine says that damage to villi can take a long, long time to show up, like years sometimes. So what would you do if after 5 weeks, you see no damage to your villi? Assume you don't have a gluten intolerance?

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

Celiac.com Sponsor (A8-M):


wolfie Enthusiast
wolfie
Posted
  • Author

Thank you all so much for the insight. It helps to talk to people who are knowledgeable about all of this. DH just says it is my body and if I don't feel like doing the test, don't! LOL! Now after another full day (3 total so far) on the gluten-free diet, I really can't see going back.....I haven't felt this good in I don't know how long. I was out today for most of the day and it was the first time in a long time I didn't have to worry about embarassing gas while shopping and then eating. As a recovering anorexic I happen to be extremely diligent about following diets, so I don't intentionally plan on eating gluten ever again. :D I am going to follow back up with my PCP and make sure she is okay with my plan....I don't see her not be as she didn't even make me see the gastro...it was my choice.

Thanks again and I look forward to learning lots more from these boards.

CMCM Rising Star
CMCM
Posted
Thank you all so much for the insight. It helps to talk to people who are knowledgeable about all of this. DH just says it is my body and if I don't feel like doing the test, don't! LOL! Now after another full day (3 total so far) on the gluten-free diet, I really can't see going back.....I haven't felt this good in I don't know how long. I was out today for most of the day and it was the first time in a long time I didn't have to worry about embarassing gas while shopping and then eating. As a recovering anorexic I happen to be extremely diligent about following diets, so I don't intentionally plan on eating gluten ever again. :D I am going to follow back up with my PCP and make sure she is okay with my plan....I don't see her not be as she didn't even make me see the gastro...it was my choice.

Thanks again and I look forward to learning lots more from these boards.

I don't know how old you are and how long you've been bothered by symptoms, but it seems that some people can get away with eating gluten for quite a long time. I did. I had a bunch of things from birth, and then it seems I was doing OK all thru my teens and 20's, but stuff starting happening in my 30's. Migraines, for one. Vague digestive problems that came and went. Got worse in my 40's. I've gotten to 56 not addressing this, but the truth was, none of my other complaints (migraines, asthma like symptoms, bloating and gas, lots of upsets, nausea after eating, and finally dizziness) were quite bad enough to make me think celiac, even though my mom has it. I wasn't underweight. But I finally got to the point fairly recently where I began to feel there was NOTHING at all I could eat that didn't bother me. So who knows what damage has been done to my intestines. Frankly, I have no intention of going that far with all this. If my Enterolab tests come back as I'm sure they will, I've got my answers. No matter what damage has been done to my intestines, the answer is the same with or without a biopsy: Avoid ALL gluten. Period. My mom was diagnosed at around 42, and she nearly died....the doctors told her that her intestinal walls were totally smooth and had no villi left. She she's been gluten free since then, she healed quickly, put back the weight, and she's now 84 and doing great. So damage doesn't have to have a bad outcome, BUT....not dealing with this, ignoring it, CAN and MAY lead to a bad outcome. Simple as that.

Carole :)

wolfie Enthusiast
wolfie
Posted
  • Author

Glad that your Mom is doing well now. So are you gluten fee already or waiting for the results before you go gluten-free?

I am 33 and have had IBS issues since I had my first child at 23. The drs always said it was a food intolerance and stay away from that food. I did narrow some down...raw onions, raw peppers, all seeds. The diarrhea went away, but the gas never did...it just got progressively worse over the years. Then after the birth of my daughter 3 years ago...it got worse and I could no longer drink milk. Drs said it was IBS and to go on a high fiber diet. That worked for the consitipation, but not the gas. Then I had a relapse with my anorexia and started seeing a nutritionist. She and I were trying to work around my problem foods when she asked if I had ever been tested for Celiac. She requested that my dr run the test and here I am. Funny thing is that I did ask my allergist last year if Celiac could be an issue...he said not unless I have a problem when I eat bread. At that point, I didn't appear to, so he brushed it off. I think I will find a new allergist now though ;)

Kim

Archived

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

Go to topic listing

  • 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
      - 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?

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

      IBS-D vs Celiac

      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.
    3. trents
      - 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?

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

      IBS-D vs Celiac

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

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

      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
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,322
    • 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
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      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
      IBS-D vs Celiac

      By trents · Posted

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

      By trents · Posted

      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
      IBS-D vs Celiac

      By SilkieFairy · Posted

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

      By catnapt · Posted

      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.