Lab Test Results-Frustrated

[MicheleR]

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!

[psawyer]

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.

[frieze]

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?

[MicheleR]

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! 

[kareng]

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.

[nvsmom]

It's not often that someone tests positive on every celiac blood test given to them! 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.

[squirmingitch]

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

[MicheleR]

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!

[freeme808]

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. 

[MicheleR]

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!!

[ravenwoodglass]

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.

[MicheleR]

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!!

[MicheleR]

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...

[kareng]

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.

[Takala]

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." 

 

 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. 

[MicheleR]

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!