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Sensitivity Vs Celiacs

KarenFe

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KarenFe Contributor
KarenFe
Posted

I had my biopsy almost 2 weeks ago and should hear from the doctor soon. His initial evaluation of my stomach and whatever else he saw was that everything he saw looked normal and I showed no typical signs of someone with celiacs. The biopsy will hopefully prove this. If it reveals celiacs, I will know what to do - a full fledged gluten-free diet from now on.

However, since I was tested positive for a sensitivity to gluten, where does that leave me? Can I make a regular birthday cake? Can I eat out a few times a year and not worry about gluten? I'm finding the sensitivity issue to be more confusing than a celiacs diagnosis. I also tested for a low allergy to wheat. I tested positive to other low allergies but continue to eat the eggs, milk, and nuts. Is this horribly bad for me?

Right after my biopsy I went gluten-free and have not noticed any changes, especially with the "bathroom" issues I have been having for over 7 months now. I need to get my iron levels up but am still feeling tired all the time.

I guess I'm finally feeling frustrated after having hope that all my ailments would disappear and they haven't.

Thanks for any help you can offer.

Karen

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Lisa Mentor
Lisa
Posted

Hi Karen,

Here are some answers to questions you might have:

Open Original Shared Link

Open Original Shared Link

Starting a gluten free diet can be pretty complicated initially. Everything need to be gluten free from your toaster, lotions, lipsticks, meds, vitamins, etc.

For most people, it takes a while to master the diet without error. And if you have intestinal damage, two weeks is a relatively short period of time for the diet to remedy. For most of us, it took a long time for damage to occure and likewise, it will take some time to heal.

I would like to know by what means were you tested for gluten sensitivity? If you post that, we have some good people who can help you interpret your results.

Hydrokube Rookie
Hydrokube
Posted

The way your stomach looks should have nothing to do with diagnosing Celiacs. You can't see damage with the eye, that's why biopsies are taken and viewed under the microscope to see if the tiny villi are damaged. According to Celiac Disease: A Hidden Epidemic, atypical symptoms are the norm for people with Celiac. The "classic" symptoms really aren't that classic after all, and many people have silent Celiac, where no symptoms are apparent but they still have it. Additionally, a percentage of people may test negative at first and test positive 1-2 years later. The current methods of testing cannot be 100% since damage must be done to diagnose it.

If you are gluten sensitive AND allergic, I would stay away from it. If you still feel badly after a few months (especially if you are Celiac, it takes time to get it out of your body), then perhaps you should consider an elimination diet to see if you are sensitive to other common irritants like soy, dairy, etc. If you do have Celiac and have had issues for a long time, it is not uncommon to develop other food intolerances or autoimmune disorders on top of Celiac.

Also, don't consider a biopsy a definite negative diagnosis because if your intestines weren't damaged badly OR if your biopsies weren't at damaged areas, you will be negative.

I would recommend checking out that book from the library, it really cleared up some things for me when I was wondering about sensitivity/intolerance/celiac/allergies. Again though, why give yourself constant allergic reactions if you can avoid it altogether? I would drop it just based on sensitivity and allergy.

I'm waiting for my biopsy results right now, so I feel for you with the anxiety of waiting. I went gluten-free too while waiting for the results and my gastritis pain is completely gone as long as I avoid even minor amounts of gluten. I hope everything works out for you.

KarenFe Contributor
KarenFe
Posted
  • Author

Thanks for the replies. I really appreciate it because I know my questions have been answered here before many times before.

Momma Goose, I will check out those links as soon as I finish this post. During the 2 months waiting for my biopsy I did lots of research, but I could certainly have missed something. I have taken the toaster off the counter and out of the kitchen, my vitamins are Nature Made which I have found to be gluten-free. For my lips I use Burt's Bees Beeswax Lip Balm and I found a list online that says Burt's Bees "Lip Balm" is gluten-free. I did not see specifically that the Beeswax kind is gluten-free but I did see the Pomegranate and the Honey kinds are. Does anyone know about the plain beeswax kind? I'll have to check my lotions though.

I was hearing about some people feeling much better after 4 days and was expecting/hoping for that. But since you mentioned it can take much longer (even with just a sensitivity if that's all I have?), I will be patient.

Here are my test results:

RAST food panel Ab IgE:

All these items have the same number result

Bean soy, egg white, egg yolk, peanut, pecan, walnut, cashew, almond, wheat, and milk were all <0.35 kU/L (0.00 - 0.35)

I eat all these things.

Tissue Transglutaminase Ab IgA+IgG Panel:

Ab IgG serum 38 (H) <r> U/mL <7

Ab IgA serum >100 (H) <r> U/mL <5

Is this enough information to help me analyze what's going on with me?

Hydrokube, that's good to know that the doctor wouldn't notice anything even if I did have celiacs. I was thinking about the test and was thinking maybe I did it for nothing. It was a huge event which I will explain below. The book you mentioned was the first book I went out and bought. I read the whole thing over 2 months ago and completely forgot about it. It looks like it is time for me to reread it.

As for the biopsy, the procedure was a breeze because I was out. The horrible part was trying to get the IV into my arm. It took probably 45 minutes. My veins are tiny and they stick and probe and stick and probe. She ended up doing it in my hand but by that time I was nauseous and my fingers and arms were numb and curled up. Then it went to my toes and I could feel it creeping up my legs. So there I was with curled up and "frozen" arms and legs and I could feel my stomach starting. It was really scary. Apparently I hyperventilated and they put a paper bag over my mouth to settle me. I had to share that story.... sort of like a birthing story. ; )

My kids are hungry so I need to go. Hopefully I've provided enough info for some help/guidance on what to do even if my biopsy shows no celiacs.

happygirl Collaborator
happygirl
Posted

You tested positive for the tTG IgA and tTG IgG blood tests, which are very specific/sensitive tests for Celiac.

Lisa Mentor
Lisa
Posted
You tested positive for the tTG IgA and tTG IgG blood tests, which are very specific/sensitive tests for Celiac.

Welcome to the Club KarenFe!

leadmeastray88 Contributor
leadmeastray88
Posted
Welcome to the Club KarenFe!

As the last two posters have mentioned...welcome!

It's very likely that you have Celiac disease based on the bloodwork, especially since the tTG was so high.

The biopsy could be negative despite the fact that you have Celiac because there may not be enough damage done yet. I read a story on here where this mom got her daughter biopsied because she had positive bloodwork. The biopsy ended up negative so they said she didn't have Celiac...she got re-biopsied a year later and Voila! Celiac. It just depends on what stage of the disease you're at.

If your doc says the biopsy is negative, I'd also highly recommend getting a second opinion. Believe it or not, not all pathologists know how to read biopsies for Celiac. It's crazy how many people got the diagnosis the second time around.

Anyway, you've found a great place with tons of good info. Definitely spend as much time as you can here and fill your mind!! :)

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KarenFe Contributor
KarenFe
Posted
  • Author

Thanks everyone. Since almost 2 weeks have passed since my biopsy and I haven't heard anything, I was starting to think all was well. I know I shouldn't do that because they said the test results could take 1 to 3 weeks. You have reminded me that my blood test results are real and they can reveal a lot too.

You also reminded me that even small amounts of gluten can affect me and I have forgotten about the Eucharist at church which I still receive. I was waiting for the biopsy results before I came up with an alternate plan for church.

Part of me is ready to take this gluten-free diet by storm because we eat fairly healthy to begin with and eating more fruits and veggies only adds to our diet rather than takes away. Then part of me feels the burden of a selective diet. It will always be on my mind much like my dad's diabetes is for him.

And then I ask myself, why at 42 does this suddenly show up?

Momma Goose, I have not gotten to those links yet, but I will. Tuesdays are always very busy for me with my kid's activities.

From what everyone says here, I'll be seeing you around here a lot from now on. :)

Thanks again,

Karen

HouseKat Apprentice
HouseKat
Posted
And then I ask myself, why at 42 does this suddenly show up?

Karen, you are a very lucky person. You had 41 good years without it and you're getting diagnosed in less than a year's time. You weren't referred to a shrink because the doctors thought that you were crazy. Your doctor actually knew what tests to run. New gluten-free products are coming out every day. Celiac disease is actually being discussed in the mainstream media. Some restaurants have gluten free menus...for crying out loud, there's even gluten-free pizza at several chains now!

For many of us, a diagnosis of celiac disease has been a blessing, because the end of our suffering was finally in sight.

Kate

  • 2 weeks later...
KarenFe Contributor
KarenFe
Posted
  • Author

I finally got a call from my doctor and he said my biopsy was fine and that I do not have celiacs. As mentioned above, my gluten sensitivity test was positive. I will be having a colonoscopy next to see if there is anything else that may be causing my diarrhea.

He really has me confused though. He said celiacs is rare and that because it's in the mainstream media these days, it's "trendy" in the GI world right now. He suggested trying an elimination diet to see if there is anything else that may be causing my issue. I've been gluten-free for 3 weeks now and there is no improvement, so something must be causing my diarrhea.

For a few days I will try an oatmeal and rice diet along with any fruits and veggies. Then I'll add milk back in and then eggs to see how things go from there.

He said I did not really need to be on a gluten-free diet if it hasn't taken care of the diarrhea.

I'm really confused.

Karen

Salax Contributor
Salax
Posted

Karen, you should be confused. That is a confusing diagnosis or lack there of. :blink: ...doctors today...

I would say that because the blood shows positive you do have celiac disease. My biopsy was negative and blood work positive. And my doc told me the same thing in 2000 (I have it, then I didn't). So, I went back to eating gluten and was ever sick for 9 years until another doc tested me again for celiac with blood work, came back positive. I say get a second opinion or just go gluten free. I would bet you definitely have celiac. And if you continue to eat gluten 10 years down the road then maybe a biopsy would be positive, but don't take that risk. Also, dairy/casein was causing my diarrhea...just a thought...Be heathly and feel better. B)

Best of luck!

leadmeastray88 Contributor
leadmeastray88
Posted

I second what Salax says.

Besides that, you'll never know if your doc even biopsied a part of your intestine that was damaged..sometimes it's patchy, maybe he didn't take enough samples, etc.

False positive bloodwork is rare, especially the tests you got.

I would highly consider getting a second opinion, or just go gluten free - and take comfort in knowing you're doing the right thing!

And it takes awhile to heal...you never know, your D may go away sooner than you think!

Don't give up and feel better :)

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