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Hi,
I've struggled with GI issues (IBS, GERD) and poly-cystic ovarian syndrome for the last 5-6 years (I am 26). My reflux has been continually getting worse and my doctor was concerned since I take high doses of Zantac. They referred me to specialty clinic for endoscopy. During my EGD doctor noticed lots of inflammation and he left a note stating that my villi in small intestine were flat. Only post op notes were to wait for the biopsy results of duodenum and along stomach; and to try another med.

I've been having a lot of fatigue and easy bruising the last few months on top of worsening reflux. I've been primary surviving on chicken, bread, carrots...but it wasn't helping like it normally seemed to. Last week I started having joint pain that moves and comes/goes, as well as tingling in my hands and feet. After the tingling/joint pain started I stopped eating gluten/complex carbs  because I thought maybe it was related to blood sugar; reflux is a little better but joint pain is not.

Does this sound familiar to anyone? I had some blood work done for vitamins/minerals and liver function. Nurse over phone said it seems within normal limits; but that my liver function was on the lowest end of normal (AST =10). I have an appointment with my regular doctor tomorrow; as of Friday they didn't have my results but they wanted to follow up on joint pain/tingling.

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Welcome!  The biopsy may reveal celiac disease, but did you doctor order a celiac blood panel?  Learn more:

http://www.cureceliacdisease.org/screening/

Continue to eat gluten until your biopsy results come in.  The blood tests require you to be in a gluten diet.  Not sure how long you have been gluten free.  Villi damage can happen for a variety of reasons, so be sure celiac disease is ruled in or out!  

 

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10 hours ago, cyclinglady said:

Welcome!  The biopsy may reveal celiac disease, but did you doctor order a celiac blood panel?  Learn more:

http://www.cureceliacdisease.org/screening/

Continue to eat gluten until your biopsy results come in.  The blood tests require you to be in a gluten diet.  Not sure how long you have been gluten free.  Villi damage can happen for a variety of reasons, so be sure celiac disease is ruled in or out!  

 

Thank you for your response! I do not think they blood tested for celiac. I know they did a few years ago but I was on a low carb diet (veggies, fruit, meat, coconut flour, seeds/nuts); when they tested me.

I have been gluten free for a week; but I had a reaction to something I ate last night. (Itchiness all over but no rash, tingling in fingers, joint pain) after cooking dinner for relatives. I hope a week isn't enough to test negative if I have it. I have appt with my new regular doctor today. Any suggestions about things I should bring up with her?

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Celiac disease can develop at anytime.  You most likely tested negative if you were gluten free (or light) during your last test.  Ask for celiac disease testing because they may have missed damaged areas if they were not looking for celiac disease.  It sounds like they could visually see damage though.  Again, other things can cause damage to the small intestine, so ruling out celiac disease is a good idea.  The blood test is cheap and simple.  

http://www.cureceliacdisease.org/faq/what-else-can-cause-damage-to-the-small-intestine-other-than-celiac-disease/

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33 minutes ago, cyclinglady said:

Celiac disease can develop at anytime.  You most likely tested negative if you were gluten free (or light) during your last test.  Ask for celiac disease testing because they may have missed damaged areas if they were not looking for celiac disease.  It sounds like they could visually see damage though.  Again, other things can cause damage to the small intestine, so ruling out celiac disease is a good idea.  The blood test is cheap and simple.  

http://www.cureceliacdisease.org/faq/what-else-can-cause-damage-to-the-small-intestine-other-than-celiac-disease/

Thank you! I will definitely ask about the blood test. I live in rural Alaska so the doctor only flies out once a month; the health aide can draw blood too but he needs an order from doctor to do it (which can time); so it's preferable to do while the doctor is here. I'm really hoping results of biopsies will be back as well. I'll update later today if she has any new info.

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23 hours ago, cyclinglady said:

Celiac disease can develop at anytime.  You most likely tested negative if you were gluten free (or light) during your last test.  Ask for celiac disease testing because they may have missed damaged areas if they were not looking for celiac disease.  It sounds like they could visually see damage though.  Again, other things can cause damage to the small intestine, so ruling out celiac disease is a good idea.  The blood test is cheap and simple.  

http://www.cureceliacdisease.org/faq/what-else-can-cause-damage-to-the-small-intestine-other-than-celiac-disease/

I went and saw the doctor yesterday and she checked the online portal for my biopsy results. They did not do a previous bloodwork for celiac in the last two years; however when she pulled up the biopsy results it said "negative for h. pylori, negative for celiac." They weren't sure what caused the villi to atrophy; so she suggested a bunch more bloodwork to check for other auto immune diseases that might cause it, food allergies, arthritis and something else. I told I've been gluten free about a week and reflux is so much better but the joint/muscle pain and tingling is the same or worse. Are the biopsies they took the best way of telling if someone has celiac? I'm relieved in a way, but at the same time I'm not because I'm still in pain and we don't know why. She suggested I stop my metformin for pcos and see if any change since I've been on it long term and await blood work.

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Is that extra blood work gong to include a celiac blood panel?  Geeezzzzz!   I would stay on gluten and insist on it!  At least really rule out celiac disease!  Joint pain or tingling could  take months or YEARS to resolve if you had celiac disease and that is on a strict gluten free diet!

I do not know about your portal, but mine is created by my doctor or lab input.  My GI or his assistant has to post results and believe me, it is short.  I ask for the actual lab results on paper.  The one that shows number of tissue samples, the pathologist's name.....etc.

Yikes!  I know metforim is hard on the gut (extended release is better, I hear), but I have not seen any studies saying it damages villi.  If it did, all those folks with diabetes (insulin resistance) would not take this "first line of defense" type 2 drug.  

If you do not get a celiac blood panel, you will never know if you have celiac disease.  Really.  The other tests can be inconclusive and where will you stand?  Limboland.  Getting sicker all the while.  

 

Edited by cyclinglady

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10 minutes ago, cyclinglady said:

Is that extra blood work gong to include a celiac blood panel?  Geeezzzzz!   I would stay on gluten and insist on it!  At least really rule out celiac disease!  Joint pain or tingling could  take months or YEARS to resolve if you had celiac disease and that is on a strict gluten free diet!

I do not know about your portal, but mine is created by my doctor or lab input.  My GI or his assistant has to post results and believe me, it is short.  I ask for the actual lab results on paper.  The one that shows number of tissue samples, the pathologist's name.....etc.

Yikes!  I know metforim is hard on the gut (extended release is better, I hear), but I have not seen any studies saying it damages villi.  If it did, all those folks with diabetes (insulin resistance) would not take this "first line of defense" type 2 drug.  

If you do not get a celiac blood panel, you will never know if you have celiac disease.  Really.  The other tests can be inconclusive and where will you stand?  Limboland.  Getting sicker all the while.  

 

I just left a message with the health aide; doctor should call this morning for radio traffic. I asked him if he could ask doctor to put in the order for celiac test on the blood she drew yesterday (in the event she didn't request it). I also got another email from my aunt who has celiac and so do some of her children she stated the following "btw, since your grandma carries the 0202 and a second 0202, that means that all the girls, your mom too, has one gene that is 0202. Whether it "turns on" or is passed on..." I don't know how significant this would be for me; but I want conclusive answers one way or another. I had only stopped eating gluten about 6-7 days before blood tests and symptoms were still the same yesterday; hopefully that won't goof up the test. I had been eating more gluten/grain products the last few months since my reflux was bothering me and usually bread/crackers/pasta is easier to handle; but I can definitely tell that not eating gluten the last week or so my reflux is significantly better; but still the joint pain, itchiness, numbness/tingling persist.

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On 5/14/2017 at 6:52 PM, DobbyNeedsaSock said:

Hi,
I've struggled with GI issues (IBS, GERD) and poly-cystic ovarian syndrome for the last 5-6 years (I am 26). My reflux has been continually getting worse and my doctor was concerned since I take high doses of Zantac. They referred me to specialty clinic for endoscopy. During my EGD doctor noticed lots of inflammation and he left a note stating that my villi in small intestine were flat. Only post op notes were to wait for the biopsy results of duodenum and along stomach; and to try another med.

I've been having a lot of fatigue and easy bruising the last few months on top of worsening reflux. I've been primary surviving on chicken, bread, carrots...but it wasn't helping like it normally seemed to. Last week I started having joint pain that moves and comes/goes, as well as tingling in my hands and feet. After the tingling/joint pain started I stopped eating gluten/complex carbs  because I thought maybe it was related to blood sugar; reflux is a little better but joint pain is not.

Does this sound familiar to anyone? I had some blood work done for vitamins/minerals and liver function. Nurse over phone said it seems within normal limits; but that my liver function was on the lowest end of normal (AST =10). I have an appointment with my regular doctor tomorrow; as of Friday they didn't have my results but they wanted to follow up on joint pain/tingling.

Check for malabsorption I get that over my celiac problem.

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