Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Lab Test Results-Frustrated
0

16 posts in this topic

I have had problems with my iron levels for over 20 years.  They drop, I get iron infusions, they go up, I feel better for a few years.  This time I went for an infusion and had an anaphylactic reaction to the Infed, which I have been getting for years.  Why is this happening all of a sudden?  My PCP referred me to a Hematologist to see what we could do.  Upon further lab testing, I found my B12 was 130.  Also low, and started B12 injections, in the hopes that they would bring up both my B12 and Iron numbers.  Well, after almost 4 months and no improvement, the Hematologist suggests doing a Celiac Panel.  

 

Low and behold, I got the voice mail from the nurse stating, "Your labs show you have celiac disease, follow a gluten free diet.  Any questions call the office."   First, tears, then confusion, then acknowledgement to what I knew to be true before the results were back.  When I told my husband that I was being tested for Celiac, what the disease was, and it's symptoms, he was the one that said I probably had it, as every time I eat, I get a stomach ache.  Even if only a small snack.  You see, I had a bowel resection in 1986 for Ulcerative Colitis.  I use carbs, mostly breads, pasta and whole grains to slow my gut down.   I have a first cousin on each side of my family with Celiac.  Yet, I hadn't considered it as the cause of my discomfort, or the cause of my chest pains, severe and getting worse joint pains, low B12 or iron, headaches, brain fog etc...   I called and made an appt with a GI for the consult and to have the endoscopy and help with where to go from here.  My appt is March 5th.  In the mean time, I have read that I have to maintain eating what's causing the cruddy symptoms.   Is there anything that can help alleviate the stomach pains?  Tums, yogurt? anything?  I am also on Levothyroxine for hypothyroidism.     My lab results are the following:

 

Tissue Transglutaminase IGA AB               99             range--0-15

Gliadin IgG Antibody EIA                          >100            range 0-15

Immunoglobulin A (IGA)                           284              range 70-410

Tissue Transglutaminase IgG  Ab              39              range  0-15

ENDOMYSIAL  IGA, AB                        POSITIVE       range   Negative

Gliadin  IgA Antibody, EIA                           20             range 0-15

 

Oh yes, and the kicker...my insurance isn't covering the lab tests....   Just looking for any and all advice for this newly diagnosed middle age woman!    thank you all in advance!

0

Share this post


Link to post
Share on other sites


Ads by Google:

Welcome!

 

Yes, it is true that you need to continue on a diet with gluten until testing, including the endoscopy, is complete.

 

I don't have any advice on mitigating the symptoms you are experiencing, but I am sure someone here will.

0

Share this post


Link to post
Share on other sites

I have had problems with my iron levels for over 20 years.  They drop, I get iron infusions, they go up, I feel better for a few years.  This time I went for an infusion and had an anaphylactic reaction to the Infed, which I have been getting for years.  Why is this happening all of a sudden?  My PCP referred me to a Hematologist to see what we could do.  Upon further lab testing, I found my B12 was 130.  Also low, and started B12 injections, in the hopes that they would bring up both my B12 and Iron numbers.  Well, after almost 4 months and no improvement, the Hematologist suggests doing a Celiac Panel.  

 

Low and behold, I got the voice mail from the nurse stating, "Your labs show you have celiac disease, follow a gluten free diet.  Any questions call the office."   First, tears, then confusion, then acknowledgement to what I knew to be true before the results were back.  When I told my husband that I was being tested for Celiac, what the disease was, and it's symptoms, he was the one that said I probably had it, as every time I eat, I get a stomach ache.  Even if only a small snack.  You see, I had a bowel resection in 1986 for Ulcerative Colitis.  I use carbs, mostly breads, pasta and whole grains to slow my gut down.   I have a first cousin on each side of my family with Celiac.  Yet, I hadn't considered it as the cause of my discomfort, or the cause of my chest pains, severe and getting worse joint pains, low B12 or iron, headaches, brain fog etc...   I called and made an appt with a GI for the consult and to have the endoscopy and help with where to go from here.  My appt is March 5th.  In the mean time, I have read that I have to maintain eating what's causing the cruddy symptoms.   Is there anything that can help alleviate the stomach pains?  Tums, yogurt? anything?  I am also on Levothyroxine for hypothyroidism.     My lab results are the following:

 

Tissue Transglutaminase IGA AB               99             range--0-15

Gliadin IgG Antibody EIA                          >100            range 0-15

Immunoglobulin A (IGA)                           284              range 70-410

Tissue Transglutaminase IgG  Ab              39              range  0-15

ENDOMYSIAL  IGA, AB                        POSITIVE       range   Negative

Gliadin  IgA Antibody, EIA                           20             range 0-15

 

Oh yes, and the kicker...my insurance isn't covering the lab tests....   Just looking for any and all advice for this newly diagnosed middle age woman!    thank you all in advance!

why isn't insurance covering?

0

Share this post


Link to post
Share on other sites

why isn't insurance covering?

No idea why they aren't covering.  I got the EOB today, I will be on the phone early Monday morning! 

0

Share this post


Link to post
Share on other sites

Some people find things like Tum, Pepto bismol, or Immodium help. You should continue to eat gluten for the endoscopy.

Your insurance should cover the tests. They may need more info from the doc. That is quite common for any illness and tests. Insurance companies want to pay as late and as little as possible.

1

Share this post


Link to post
Share on other sites




It's not often that someone tests positive on every celiac blood test given to them! :o I'm surprised they want to bother with a biopsy at all, especially with a positive EMA test which indicates a lot of intestinal damage must be present.  If your insurance doesn't cover the biopsy, I would consider skipping it...You already have 5 tests confirming a celiac diagnosis.  :(

 

You might want to add methylcobalamin B12 sublingual tablets. They  tend to absorbed better than other B12 supplements.

 

Things like yogurt and milk may not help at all.  Many celiacs are lactose intolerant, which I have found causes a very similar type of gut pain as gluten.  Some have to drop dairy entirely because the casein (protein) affects them as well.  You might want to consider cutting out your dairy and substituting coconut or almond milk products in the meantime.

 

L-glutamine is supposed to help with muscle and intestinal healing. It might be worthwhile to add that supplement into your diet for the next year.

 

Probiotics are often helpful.

 

A whole foods diet is a bit easier on our systems, and a much more natural way of eating.  Almost all people seem to feel better eating this way.

 

Best wishes.

1

Share this post


Link to post
Share on other sites

I might add that many of us have problems with soy so you could try eliminating that also.

1

Share this post


Link to post
Share on other sites

Thank you folks for taking the time to respond.  I have been doing ALOT of reading, and figured my test results were pretty positive, but didn't realize it probably means alot of damage already.  I'm disappointed that I have to wait 3+ weeks after getting the lab tests to be seen by a gastroenterologist.   He may decide not to pursue a biopsy, but, in the mean time, I am continuing with the regular gluten filled diet.  At least now I know why my stomach hurts so much after ingesting food.  I have already started to buy some gluten free things to incorporate so that hopefully, I am not suffering all the time.   I have found alot of great resources on this site, for that i say thank you!  You are all going to make this road to transition much easier for me!

0

Share this post


Link to post
Share on other sites

Hi, I feel for you having to wait 3 weeks! Last month I was going bonkers. When you do go gluten-free, plenty of veggies, fruit, gluten-free grains like quinoa, brown rice, etc. and fish or chicken 2x a week is good while you are healing-no dairy. I love coconut milk! I also found fish is easier for me to break down instead of chicken. I've been eating this way for 2 1/2 weeks now and can honestly say that I don't miss anything. Feeling good is my strength to keep my away from bad foods. 11lbs down is also like a little reward. :) I also can't have sugar for other reasons. But I also love to cook, so once my leaky gut heals, once in a while I will indulge in a little homemade "goodies". Haha, my husband brought home orange chicken the other night, lost my cool, lol thinking I'm never going to have it again...just one bite. Thank God I didn't, but I also came to realize that I can make that from scratch and gluten-free. :) Needless to say, it will be a while before that...but knowing that I/we can pretty much make everything prior to going gluten-free, gluten-free..makes me feel better. Good luck with everything, and I hope you feel better soon! Maybe check out some gluten-free cookbooks, and don't forget to focus on all the naturally gluten-free foods you can eat. 

0

Share this post


Link to post
Share on other sites

So, I did finally see the gastroenterologist, who said I have probably been dealing with Celiac since I was young.  He wants to do the biopsies to rule otu any dysplasia in the small intestine.  Apparently, the issues I have dealt with for the last 27yrs that I thought was the result of having my large intestine removed for ulcerative colitis, may in fact have been Celiac Disease.  I am scheduled for the testing (endo) on 3/26.   In the meantime, I am also having a cardiac work up due to chest pains for several months, and a really ugly family history of heart troubles.   I am ready to feel better, and start my "new life" and hopefully lose a few pounds too!   Thank you for this board, as I have learned so much!   Nervous to find out how much damage I have done to my small intestine, without even realizing it.  Any input on Celiact?   Is it worth it?   I checked out their Facebook page and they don't update it, nor do they respond to questions posted on it, so I am leary to order from them...  Opinions?   Thank you again!!

0

Share this post


Link to post
Share on other sites

Since the doctor has already confirmed that you likely have had celiac for years you might want to call and have a nurse ask him, or get a call back from him yourself, getting permission to go ahead and start the diet.

As far as this supplement is concerned IMHO it is too expensive for the vitamin levels it provides. We often need more than they contain. It is a good idea to have your doctor do testing of your vitamin and mineral levels and supplement those you are deficient in with larger doses than this very expensive product provides.

1

Share this post


Link to post
Share on other sites

So tomorrow is my endoscopy.  Hubby has been great with support, he's read everything I have put in front of him and asked good questions.  Most importantly, he has let me cry, hugged me and is ready to make the diet changes with me. He even offered to help me empty the kitchen and pantry yesterday of items with gluten.   It will be a good thing for both of us!!  Anything I need to know about after the endoscopy?  Throat soreness?  Anything I should pick up at the store today or make sure I should have on hand for after?   I am more paranoid about this than probably most, as I battled ulcerative colitis for years as a teenager, so when it comes to bowel issues of any kind, I get nervous as heck.  Thank you!!

0

Share this post


Link to post
Share on other sites

I had my endoscopy this morning, with multiple biopsies of course.  The MD said he completed multiple biopsies and also found a gastric ulcer that was not raw or bleeding.  He also biopsied the ulcer.  Now here's the catch, all 6 of the Celiac Panel lab tests came back positive (results are listed above) and when I had my office visit with the GI he said I definately have Celiac with those results.  The biopsies were mostly to evaluate how much damage was done and to see if there was any dysplasia.  After my procedure today, the MD said I didn't have to go gluten free until the biopsy results are back.  I was psychologically ready to start this new way of life, and now.....   I'm so confused.  I was pretty sleepy when I spoke with him today, and didn't think to ask if he wanted me to wait to give me more time to adjust or if he thinks something else is going on.  I had UC as a kid, that when removed, it was path reported to be "indeterminate colitis", meaning Crohns or UC, it was a tough call.   I did discuss this with him when we met in the office 2 weeks ago and he said that if it was Crohn's, I would have had fistula's or other issues, as that was all over 28 yrs ago.   I am just so dang confused right now.  Does any of this make sense to anyone?  Sorry if I rambled...

0

Share this post


Link to post
Share on other sites

I had my endoscopy this morning, with multiple biopsies of course.  The MD said he completed multiple biopsies and also found a gastric ulcer that was not raw or bleeding.  He also biopsied the ulcer.  Now here's the catch, all 6 of the Celiac Panel lab tests came back positive (results are listed above) and when I had my office visit with the GI he said I definately have Celiac with those results.  The biopsies were mostly to evaluate how much damage was done and to see if there was any dysplasia.  After my procedure today, the MD said I didn't have to go gluten free until the biopsy results are back.  I was psychologically ready to start this new way of life, and now.....   I'm so confused.  I was pretty sleepy when I spoke with him today, and didn't think to ask if he wanted me to wait to give me more time to adjust or if he thinks something else is going on.  I had UC as a kid, that when removed, it was path reported to be "indeterminate colitis", meaning Crohns or UC, it was a tough call.   I did discuss this with him when we met in the office 2 weeks ago and he said that if it was Crohn's, I would have had fistula's or other issues, as that was all over 28 yrs ago.   I am just so dang confused right now.  Does any of this make sense to anyone?  Sorry if I rambled...

 

 

Maybe he just thought you would like a few days to "binge" on gluten?  I had every blood test off the charts positive so I just went gluten-free after the endoscopy.  It takes a while to get the diet figured out, so I know I wasn't perfectly gluten-free for a few weeks.

0

Share this post


Link to post
Share on other sites

Normal or near normal people who are not sick think that going on a gluten free diet is a real hardship, so probably this gastro doc thinks he's doing you a favor and giving you a "free gluten" pass for a few days before the Bad News, "just in case."  :rolleyes:

 

 I use carbs, mostly breads, pasta and whole grains to slow my gut down.

 

Actually, it would be the fiber in those carbs that is contributing to the slowing, or regulating, so your gluten free diet, with your missing section, may have to be done a little more carefully than a more casual gluten free one.   Aka brown rice instead of white rice, sweet potatoes (lots of fiber) instead of white potato, you may have to make your own gluten-free breads with your selection of whole grain mixes, etc, to get what you want. 

0

Share this post


Link to post
Share on other sites

Thank you for your posts folks!  Hubby and I already eat no white potatoes and no white rice, as he is diabetic.  So I try to keep our diets pretty good all the time.  Thanks again!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,113
    • Total Posts
      919,443
  • Topics

  • Posts

    • Hi Michael, That's quite a spike in blood pressure!  I haven't tested that myself and don't want to if it means I have to eat gluten.  Blood pressure testing to identify food reactions is something that has come up before.  It sounds like it might be possible but I don't know how much study has been done on it.  Probably not much since it is such a simple, straight forward idea. Welcome to the forum!
    • Hi Megan, Did the doctor test you for celiac disease?  You really shouldn't go gluten-free until all the testing for celiac disease is completed.  It is a little odd for a doctor to tell you to go gluten-free for no reason IMHO.  Did he/she explain the reason for it? Personally, I have learned over the years what I can eat safely and what I can't.  Occasionally I get hit but it is rare.  Simplifying your diet is a good first step.  Avoiding processed foods for a while and dairy also is good.  I suggest any change you make last for a month at least. Then try the food again. If you are eating 100 random ingredients/foods each day it is hard to figure these things out.  If you reduce it to a much smaller number of foods then things become simpler. Welcome to the forum!
    • hey! Wondering if I can get some good info/help from you guys! I just signed up for this website couple weeks ago. Whenever I would Google things this was always the first to pop up and I always found info on things I googled. I am pretty new to the gluten free thing. I had a hernia surgery back in Jan and after that I kept throwing up after eating, the DR. told me it was probably acid reflex caused from surgery but all the meds I tried nothing helped. I went back and was told to cut gluten out. I have been doing so since. When I first started I felt like I had it under control and didn't throw up for 3 weeks, now I find it happening more often. I do buy gluten-free things and read labels to the best I can. My frustration comes from not knowing what its from. How do you know if its from the day before or what you just ate? I hate not knowing. Especially when I haven't had gluten (or so I think) I have been keeping a journal but I just find it so hard. I get this feeling in my stomach and can feel it in my throat. Sometimes I puke once sometimes 5 times! Yesterday for lunch I made an omlet with chicken mushrooms and feta cheese. I threw up almost 20 min after. I have also tried the no dairy thing and it doesn't seem to make a difference so I don't think dairy is an issue as well.
    • I have been on a gluten-free diet for exactly one-year. During that time, I have had no stomach issues or problems when I inadvertently ingested gluten. The other day, I had GI discomfort (no vomiting or diarrhea) and my blood pressure spiked t0 200/98 (normally 119/75). As my GI discomfort subsided, my pressure crept back to normal. This took about 16-hours. I know that I ingested something with gluten, which I had thought was gluten-free.  It never bothered me before. Should I expect that the longer I'm gluten-free, the more susceptible I will be to having a pronounced reaction to inadvertent gluten exposure? Has anyone else had similar experiences with blood pressure spikes?
    • If this is helpful: My local public library had a copy of Breaking the Vicious Cycle by Elaine Gottschall.  There is a Facebook group, I believe it is easily found by searching SCD Diet, and it's a closed group.  If you go directly to the official website of Breaking the Vicious Cycle, there's lots of information for free available, including the basics about the intro diet and beyond.  I would go to the original source of this diet rather than go to other groups/books who have perhaps veered away from Elaine Gottschall's fundamentals. Best wishes to you!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,150
    • Most Online
      1,763

    Newest Member
    Ayryil
    Joined