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So Frustrated...

Coolclimates

By Coolclimates
in Coping with Celiac Disease

Recommended Posts

Coolclimates Collaborator
Coolclimates
Posted

I just found out from my most recent blood panel test that my antibodies are even higher than what they were 6 months ago! For the last 6 months, I have been so insanely careful about what I eat but I still don't seem to be healing. I have confirmed celiac disease but will be going back up to Chicago in a few weeks to get a repeat endoscopy to see if my intestines are still as bad as they were last time.

I don't have the classic GI symptoms. In fact, I don't seem to get any reaction at all when I eat gluten. But I'm constantly struggling with fatigue, insomnia and a host of other problems.

I am worrying that I might have refractory or non responsive celiac disease.

I suppose it's also possible that I might not have celiac disease at all, rather have some other condition that is mimicking celiac disease.

I'm so frustrated. Just had to vent.

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SeparateToasters Newbie
SeparateToasters
Posted

I just found out from my most recent blood panel test that my antibodies are even higher than what they were 6 months ago! For the last 6 months, I have been so insanely careful about what I eat but I still don't seem to be healing. I have confirmed celiac disease but will be going back up to Chicago in a few weeks to get a repeat endoscopy to see if my intestines are still as bad as they were last time.

I don't have the classic GI symptoms. In fact, I don't seem to get any reaction at all when I eat gluten. But I'm constantly struggling with fatigue, insomnia and a host of other problems.

I am worrying that I might have refractory or non responsive celiac disease.

I suppose it's also possible that I might not have celiac disease at all, rather have some other condition that is mimicking celiac disease.

I'm so frustrated. Just had to vent.

I am very sorry to hear about your situation. I am very interested to hear what you find out because my daughter is having a similar problem. After we have carefully had her follow a gluten free diet for a year, her latest blood tests showed no change in antibody levels. We are trying to decide what our next step is. I really don't want to have her go through another endoscopy. I know my post is not helpful to you but I just wanted to say that I understand your frustration. Please post what you find out. It may be helpful to others like my daughter. I hope you find some answers.

gfcolorado Newbie
gfcolorado
Posted

I just found out from my most recent blood panel test that my antibodies are even higher than what they were 6 months ago! For the last 6 months, I have been so insanely careful about what I eat but I still don't seem to be healing. I have confirmed celiac disease but will be going back up to Chicago in a few weeks to get a repeat endoscopy to see if my intestines are still as bad as they were last time.

I don't have the classic GI symptoms. In fact, I don't seem to get any reaction at all when I eat gluten. But I'm constantly struggling with fatigue, insomnia and a host of other problems.

I am worrying that I might have refractory or non responsive celiac disease.

I suppose it's also possible that I might not have celiac disease at all, rather have some other condition that is mimicking celiac disease.

I'm so frustrated. Just had to vent.

I know how frustrating it is to have positive blood tests. I just had 3 year repeat followup testing and my DGP IGA was high. I just had a biopsy to see if I have any more damage and am waiting for the results. I am similar to you in that I don't really have a reaction so I usually don't know if I was cross contaminated.

Which blood tests did you have done? Have you had your thyroid tested? A lot of people who have Celiac also have Hashimotos and that could cause you to feel fatigued.

I'll let you know what my biopsy shows. Keep us posted!

Coolclimates Collaborator
Coolclimates
Posted
  • Author

thanks for your nice comments. Yes, I have been tested for thyroid recently and no problems there. Both of my parents have hypothyroid so I test often.

I had the Tissue Transglutaminase IgA Ab which was 53 (20 or below is normal)

and the Deam Gliadin IgA Ab which was 83 (20 or below is normal)

Well, it sounds like I'm not the only one with this frustrating problem. I will keep you posted about my biopsy results, but that won't be until Nov 17.

Coolclimates Collaborator
Coolclimates
Posted
  • Author

BTW, I had the same tests done in April 2011. The results:

Tissue Transglutaminase IgA Ab was 44 (20 or below is normal)

and the Deam Gliadin IgA Ab was 79 (20 or below is normal).

So the numbers were even worse this time around!

weluvgators Explorer
weluvgators
Posted

I am sorry that you continue to struggle with elevated antibody loads. I hope that you are able to figure things out soon. It has taken us years to figure out what works well for our family. Having other Super Sensitives to help in our journey made a huge, tremendous impact in our health and well being. I consider us to have a conservative gluten free diet, and we follow super sensitive guidelines for food sourcing. When I initially went gluten free for my nursing child, I was unaware of the issues that I would later recognize as gluten symptoms for myself. I had to be super duper strict for my nursing child in our efforts to get her antibody levels down, and it was enlightening. Once I had reached that super conservative baseline for myself, it became much easier to recognize when I was getting into gluten. Have you hung out in the Super Sensitive forum much? And have you tried to implement the suggestions of the Super Sensitive group? It was astonishing for me to realize just how much trace gluten we continued to consume before adopting the strategies that the Super Sensitives has been able to develop. I also think that home testing of foods for gluten was instrumental in helping more celiacs gain a better awareness for what we are facing in our current food chain environments. Good luck! Many of us can relate to long struggles in regaining our health.

Coolclimates Collaborator
Coolclimates
Posted
  • Author

I have hung out in the Super Sensitive forum a bit but I might go back and see what they might say regarding this issue.

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dilettantesteph Collaborator
dilettantesteph
Posted

I have hung out in the Super Sensitive forum a bit but I might go back and see what they might say regarding this issue.

If you post in that section we can give you a big list of recommendations. You can also PM me. I've written up recommendations for super sensitives that I can send you.

Britgirl Rookie
Britgirl
Posted

My mum is super sensitive to gluten like others mentioned here. It is amazing how much gluten there is that's hidden or in things you didn't realise. I am not quite at that point yet, but am already discovering how frustrating it is trying to track things down that can harm you. As well as my Celiac, I am also hypothyroid and have Lyme. Actually, Lyme I think is almost on a par with Celiac trying to accurately diagnose and treat it. It has caused extreme fatigue and joint pain, as well as GI issues for me.

Good luck, I hope you get some answers soon!

Coolclimates Collaborator
Coolclimates
Posted
  • Author

Britgirl, that is interesting that you mentioned Lyme disease. I had a bout of that in 2001, way before I was diagnosed with celiac disease. I actually got diagnosed with it pretty quickly (as I suspected that I had it) and took 1 month of strong antibiotics. But I'm hoping that was it and that it hasn't somehow stayed in my body and caused all these other problems. My parents both have hypothyroid and I get tested often, but so far my tests have all been negative.

It's even harder to get answers with some of the medications that I'm taking. It gets so maddening.

Britgirl Rookie
Britgirl
Posted

Britgirl, that is interesting that you mentioned Lyme disease. I had a bout of that in 2001, way before I was diagnosed with celiac disease. I actually got diagnosed with it pretty quickly (as I suspected that I had it) and took 1 month of strong antibiotics. But I'm hoping that was it and that it hasn't somehow stayed in my body and caused all these other problems. My parents both have hypothyroid and I get tested often, but so far my tests have all been negative.

It's even harder to get answers with some of the medications that I'm taking. It gets so maddening.

One month of meds doesn't cut it with Lyme unfortunately :( My MD has me on 4 months of Doxycycline to keep it in check. It is such a pesky spirochete that it hides from the antibiotic and can flare again way down the road. Might be worth finding a Lyme literate doctor who can run the IgeneX test for you.

For my thyroid, my regular doctor said I was at normal levels, however my Lyme specialist caught it with the 3 part test that showed it to be just slightly above the normal level they check for. I can't remember, but I think it's the ultra sensitive TSH I got that result on. I actually went and picked up my script today and the pharmacy ran out (!!) I can't wait to have my energy back lol

Coolclimates Collaborator
Coolclimates
Posted
  • Author

Yikes! I hope that it isn't the Lyme disease that I had 10 years ago. But even if I did have active Lyme disease, does it mimic Celiac Disease (the high antibodies and blunting of the villi)? Or is it maybe that I'm not healing with the celiac disease because the Lyme disease is preventing me from doing so? I need to do some more research about Lyme disease and if and how it correalates with celiac disease. Anyone else have any imput on this?

Britgirl Rookie
Britgirl
Posted

Because Lyme is a systemwide infection, it can affect everything going on in your body. So you could have other things going on in your body that the Lyme spirochete has it's hand in so to speak. I am active on another forum just for Lyme disease and there are a ton of members there that can give you some answers to your questions. My best advice is to locate a doctor that knows and treats Lyme according to current guidelines and pay them a visit. You'll find that Lyme is kind of the ugly step child of medicine, many MD's still refuse to believe it's a real disease which is really sad for those people suffering from it.

Anyway let me know if you want the name of the forum and I will PM it to you.

Coolclimates Collaborator
Coolclimates
Posted
  • Author

is the name of the forum "the Lyme disease thread"? It's so long that I've just read a few pages of it. I wonder if there's any way to be tested to see if I still have any Lyme disease lingering in my body.

Britgirl Rookie
Britgirl
Posted

Nope, that's not the one I'm talking about. Here is where you can read more on the subject: Open Original Shared Link Very knowledgeable over there. You will want to get the Igenex test done as this is more accurate and sensitive than the other tests available for Lyme.

  • 1 month later...
Coolclimates Collaborator
Coolclimates
Posted
  • Author

well, I'm finally happy to report that I got my endoscopy and it looks like I'm beginning to make improvement. So that is very good news. I do not know any details (I need to get the report sent to me from the University of Chicago) but my dietician called me personally and spoke to me on Wednesday (this being a holiday weekend has delayed me getting the information from the clinic or getting a call from the doctor). I think I will try to contact the clinic and ask them when I should be expecting to hear more info about the results. But it's a huge relief for me. I have just become aware of the conundrum "no gluten ingredients" posted on certain food products (particularly Trader Joes) and have come to realize that these products may NOT be safe for me. Again, I am non-symptomatic if I get glutened.

sandsurfgirl Collaborator
sandsurfgirl
Posted

Is there any stone unturned for hidden gluten for you? Are you in a completely gluten free home? Are all of your beauty products gluten free? I'm just wondering if there's something you haven't thought of yet. I've seen wheat in hand sanitizer of all things. Can't remember the brand.

kareng Grand Master
kareng
Posted

Wlee...That sounds like a step in the right direction! :)

Hope those docs put down the left-over turkey and pie & call soon.

Coolclimates Collaborator
Coolclimates
Posted
  • Author

I'm gonna call them tomorrow and ask them to get off their butts and do it...I need more answers. I mean the news is good initially, but I got a very brief reply from my dietitian and I want to know what that actually found in the report.

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