New Here-Story & Question

[kitty-witty]

Hi everyone!  I've been reading here for a long time, but this is my first post.  I'll try to keep this short.    I went gluten-free 2 yrs ago on a hunch and felt better immediately.  Unfortunately, I was uninformed and didn't get tested for celiac disease before going gluten-free.  When I first went gluten-free, I followed the Paleo diet, but about a year into it, I added some gluten-free grains/carbs back in (was losing weight and already underweight) and I've slowly started to feel bad again.  I've been trying to put on the 10lbs I lost 2 yrs ago prior to going gluten-free, but my weight won't budge.  I'm a 5'5, 100lb, 40 yr old female.  I'm still having bloating and abdominal pain or discomfort/distention sometimes. I feel full soon after eating and I have diarrhea/loose stools every day and frequent headaches and feel extremely tired. 

 

So, I recently saw a GI Dr. for the 1st time.  She did some bloodwork/stool samples and an endoscopy and colonoscopy (both with biopsies) based on my symptoms (weight loss/failure to gain on a 2200 cal/day diet, floating/loose stools, diarrhea, bloating/abdominal pain) and what came back was positive celiac gene test (DQ2),  low Vit D, fat in my stool, gastritis and Barrett's esophagus.  I had some inflammation in my duodenum and descending colon, but no signs of celiac (of course b/c I've been gluten-free for 2 yrs), or colitis. 

 

Vit B12 was 435 (normal by US standards, low by European standards), folate was normal.  My CBC/Hgb/Hct were normal at my last PCP visit in March, but haven't had ferritin level checked.  I'm SO tired.  Also, my TSH and total T4 are normal, but wondering if I need my free T3/T4 checked?  Wondering about Hashimoto's, too.

 

I was quite shocked at the Barrett's esophagus Dx.  Apparently I've had severe GERD for years, but have had no symptoms (although maybe the fullness soon after eating and bloating were my symptoms? but I've never had heartburn).  In retrospect, I think I had a few things happen that could be explained by GERD (waking up at 5 or 6 am a few times to vomit and then being fine the rest of the day, vomiting after eating a chocolate candy bar (happened twice about 20! years ago), and having white spots on my front teeth (acid damage to enamel? although they have pretty much gone away--that was 20 yrs ago, too).

 

But I'm surprised the last 2 yrs of being gluten-free wouldn't have improved the GERD?  Maybe the damage had already been done??

 

I have a follow-up appointment with my Dr. next Thurs. to go over the biopsy results more thoroughly and to discuss the Barrett's.  She also wants to do more testing, including testing for small intestinal bacterial overgrowth, doing a CT scan of my abdomen, and possibly the camera pill to see the rest of my small intestine.

 

My Dr. thinks it's very possible that I have celiac disease based on my positive gene test, weight loss, signs of malabsorption, the fact I feel *so* much better since going gluten-free (despite the recent symptoms, I'm much better than I was 2 yrs ago!), and my family history of autoimmune disease.  I also had a bone density screening 15 yrs. ago that showed osteopenia (need to ask GI Dr. about a DEXA) and I had scoliosis when I was a kid which I read is connected to celiac.  The Barrett's esophagus seems to be related to celiac, too.

 

Looking back, I had "stomach issues" starting when I was 8 yrs old (1980) and I had some testing done (I only remember the barium swallow and my mom can't remember what I was tested for!) that didn't show anything.  I'm wondering if I've had celiac all along--esp. since I have Barrett's and I read that it takes 10+ yrs of severe GERD to develop that.

 

(I realize I could have other food intolerances, too, and I'll talk to my Dr. about that.  I do not eat dairy or soy which I know are often not tolerated by celiacs.)

 

It sounds like my Dr. wants to do the camera pill even knowing I've been gluten-free for 2yrs.  I told her I think I was gluttened while in Mexico in Feb. and I just found out the Advil Liqui-Gels I was taking for headaches for the last year has gluten in it (don't know why I never checked before taking it!!), but I don't know if that would be enough to cause villous atrophy.  I think she wants to check my small intestine anyway, but I'm wondering if this might be an opportunity to do a gluten challenge and get a definitive Dx??  I'm really apprehensive about the idea of consuming gluten again, but I really would like the validation from a Dr so I can say "I have celiac disease" esp. when talking to other people about why I can't eat this or that (I know you all can relate to that!). 

 

What do you all think about doing a gluten challenge before the camera pill?  I'm thinking since it's looks at your whole intestine (something like 50,000 pictures!) vs. just a few biopsies of a small area, this might be my best chance at getting a diagnosis.  I realize a negative diagnosis doesn't mean I don't have celiac, but I'm thinking this might be my only and last chance at getting a possible Dx! 

 

Thanks for letting me share my story and ask my question!  Sorry it ended up not being short after all! 

[cyclinglady]

Hi everyone!  I've been reading here for a long time, but this is my first post.  I'll try to keep this short.    I went gluten-free 2 yrs ago on a hunch and felt better immediately.  Unfortunately, I was uninformed and didn't get tested for celiac disease before going gluten-free.  When I first went gluten-free, I followed the Paleo diet, but about a year into it, I added some gluten-free grains/carbs back in (was losing weight and already underweight) and I've slowly started to feel bad again.  I've been trying to put on the 10lbs I lost 2 yrs ago prior to going gluten-free, but my weight won't budge.  I'm a 5'5, 100lb, 40 yr old female.  I'm still having bloating and abdominal pain or discomfort/distention sometimes. I feel full soon after eating and I have diarrhea/loose stools every day and frequent headaches and feel extremely tired. 

 

So, I recently saw a GI Dr. for the 1st time.  She did some bloodwork/stool samples and an endoscopy and colonoscopy (both with biopsies) based on my symptoms (weight loss/failure to gain on a 2200 cal/day diet, floating/loose stools, diarrhea, bloating/abdominal pain) and what came back was positive celiac gene test (DQ2),  low Vit D, fat in my stool, gastritis and Barrett's esophagus.  I had some inflammation in my duodenum and descending colon, but no signs of celiac (of course b/c I've been gluten-free for 2 yrs), or colitis. 

 

Vit B12 was 435 (normal by US standards, low by European standards), folate was normal.  My CBC/Hgb/Hct were normal at my last PCP visit in March, but haven't had ferritin level checked.  I'm SO tired.  Also, my TSH and total T4 are normal, but wondering if I need my free T3/T4 checked?  Wondering about Hashimoto's, too.

 

I was quite shocked at the Barrett's esophagus Dx.  Apparently I've had severe GERD for years, but have had no symptoms (although maybe the fullness soon after eating and bloating were my symptoms? but I've never had heartburn).  In retrospect, I think I had a few things happen that could be explained by GERD (waking up at 5 or 6 am a few times to vomit and then being fine the rest of the day, vomiting after eating a chocolate candy bar (happened twice about 20! years ago), and having white spots on my front teeth (acid damage to enamel? although they have pretty much gone away--that was 20 yrs ago, too).

 

But I'm surprised the last 2 yrs of being gluten-free wouldn't have improved the GERD?  Maybe the damage had already been done??

 

I have a follow-up appointment with my Dr. next Thurs. to go over the biopsy results more thoroughly and to discuss the Barrett's.  She also wants to do more testing, including testing for small intestinal bacterial overgrowth, doing a CT scan of my abdomen, and possibly the camera pill to see the rest of my small intestine.

 

My Dr. thinks it's very possible that I have celiac disease based on my positive gene test, weight loss, signs of malabsorption, the fact I feel *so* much better since going gluten-free (despite the recent symptoms, I'm much better than I was 2 yrs ago!), and my family history of autoimmune disease.  I also had a bone density screening 15 yrs. ago that showed osteopenia (need to ask GI Dr. about a DEXA) and I had scoliosis when I was a kid which I read is connected to celiac.  The Barrett's esophagus seems to be related to celiac, too.

 

Looking back, I had "stomach issues" starting when I was 8 yrs old (1980) and I had some testing done (I only remember the barium swallow and my mom can't remember what I was tested for!) that didn't show anything.  I'm wondering if I've had celiac all along--esp. since I have Barrett's and I read that it takes 10+ yrs of severe GERD to develop that.

 

(I realize I could have other food intolerances, too, and I'll talk to my Dr. about that.  I do not eat dairy or soy which I know are often not tolerated by celiacs.)

 

It sounds like my Dr. wants to do the camera pill even knowing I've been gluten-free for 2yrs.  I told her I think I was gluttened while in Mexico in Feb. and I just found out the Advil Liqui-Gels I was taking for headaches for the last year has gluten in it (don't know why I never checked before taking it!!), but I don't know if that would be enough to cause villous atrophy.  I think she wants to check my small intestine anyway, but I'm wondering if this might be an opportunity to do a gluten challenge and get a definitive Dx??  I'm really apprehensive about the idea of consuming gluten again, but I really would like the validation from a Dr so I can say "I have celiac disease" esp. when talking to other people about why I can't eat this or that (I know you all can relate to that!). 

 

What do you all think about doing a gluten challenge before the camera pill?  I'm thinking since it's looks at your whole intestine (something like 50,000 pictures!) vs. just a few biopsies of a small area, this might be my best chance at getting a diagnosis.  I realize a negative diagnosis doesn't mean I don't have celiac, but I'm thinking this might be my only and last chance at getting a possible Dx! 

 

Thanks for letting me share my story and ask my question!  Sorry it ended up not being short after all! 

I was recently diagnosed during a routine colonoscopy and the doc noticed I had anemia and hashimoto's (he must have just attended a conference!)  My husband has been gluten-free for 12 years and has not been formally diagnosed and has adhered to the diet.  He's ability to get health insurance and probably life insurance is plus (I have had a hard time getting insurance just having hashimoto's!)  I'm hoping others on the site will help you make your decision.

[GFinDC]

Hi,

 

If it is really worth it to you to make yourself sick for a diagnosis, that's fine.  Most celiac centers suggest around 6 weeks to 12 weeks for a gluten challenge.  If you have symptoms that resolve when you don't eat gluten it seems to me there is no need for a diagnosis.  But each person has to decide that for themselves.  Ask yourself how much difference it makes to you to have a doctor say he agrees with you.  Some people have symptoms develop during a gluten challenge that don't go away quickly. There is a risk with doing them.

[kitty-witty]

I was recently diagnosed during a routine colonoscopy and the doc noticed I had anemia and hashimoto's (he must have just attended a conference!)  My husband has been gluten-free for 12 years and has not been formally diagnosed and has adhered to the diet.  He's ability to get health insurance and probably life insurance is plus (I have had a hard time getting insurance just having hashimoto's!)  I'm hoping others on the site will help you make your decision.

Hi cyclinglady,

I guess you also sent me a private message b/c I replied this morning to that one.    Thanks again!

[kitty-witty]

Hi,

 

If it is really worth it to you to make yourself sick for a diagnosis, that's fine.  Most celiac centers suggest around 6 weeks to 12 weeks for a gluten challenge.  If you have symptoms that resolve when you don't eat gluten it seems to me there is no need for a diagnosis.  But each person has to decide that for themselves.  Ask yourself how much difference it makes to you to have a doctor say he agrees with you.  Some people have symptoms develop during a gluten challenge that don't go away quickly. There is a risk with doing them.

Hi GFinDC,

Thanks so much for your reply.  I just would like to be able to say "I have celiac disease" instead of "I can't eat gluten" --esp. b/c so many people are cutting gluten out that it's becoming a fad (although I think wheat/gluten isn't good for anybody and hopefully it won't stay a "fad" but become a new way of eating).  I don't want people to think I'm doing it for attention or something!  I go to a lot of dinners with my husband for his job and I don't like calling attention to myself by asking a bunch of questions about the menu, kitchen, etc.  It would be easier to say to his co-workers that I have celiac disease, not try to explain why I can't have gluten.  I guess it doesn't really matter, though. 

 

I'd also like to know b/c I'm having lingering issues that I thought would be better by now since I've been gluten-free for 2 yrs.  I still have fatty stools and can't gain weight (I'm 5'5 and 100 lbs.).  Thankfully, my GI Dr. is very thorough and is doing a bunch of tests to rule out other possibilities.  She did not recommend doing a gluten challenge for the pill cam test b/c she said only extensive damage would show on the pill cam and it would take a lot of gluten over a long period of time to produce that kind of damage since I've been gluten-free for 2 yrs.

 

Thanks again for your input! 

[1desperateladysaved]

Hi everyone!  I've been reading here for a long time, but this is my first post.  I'll try to keep this short.    I went gluten-free 2 yrs ago on a hunch and felt better immediately.  Unfortunately, I was uninformed and didn't get tested for celiac disease before going gluten-free.  When I first went gluten-free, I followed the Paleo diet, but about a year into it, I added some gluten-free grains/carbs back in (was losing weight and already underweight) and I've slowly started to feel bad again.  I've been trying to put on the 10lbs I lost 2 yrs ago prior to going gluten-free, but my weight won't budge.  I'm a 5'5, 100lb, 40 yr old female.  I'm still having bloating and abdominal pain or discomfort/distention sometimes. I feel full soon after eating and I have diarrhea/loose stools every day and frequent headaches and feel extremely tired. 

 

So, I recently saw a GI Dr. for the 1st time.  She did some bloodwork/stool samples and an endoscopy and colonoscopy (both with biopsies) based on my symptoms (weight loss/failure to gain on a 2200 cal/day diet, floating/loose stools, diarrhea, bloating/abdominal pain) and what came back was positive celiac gene test (DQ2),  low Vit D, fat in my stool, gastritis and Barrett's esophagus.  I had some inflammation in my duodenum and descending colon, but no signs of celiac (of course b/c I've been gluten-free for 2 yrs), or colitis. 

 

Vit B12 was 435 (normal by US standards, low by European standards), folate was normal.  My CBC/Hgb/Hct were normal at my last PCP visit in March, but haven't had ferritin level checked.  I'm SO tired.  Also, my TSH and total T4 are normal, but wondering if I need my free T3/T4 checked?  Wondering about Hashimoto's, too.

 

I was quite shocked at the Barrett's esophagus Dx.  Apparently I've had severe GERD for years, but have had no symptoms (although maybe the fullness soon after eating and bloating were my symptoms? but I've never had heartburn).  In retrospect, I think I had a few things happen that could be explained by GERD (waking up at 5 or 6 am a few times to vomit and then being fine the rest of the day, vomiting after eating a chocolate candy bar (happened twice about 20! years ago), and having white spots on my front teeth (acid damage to enamel? although they have pretty much gone away--that was 20 yrs ago, too).

 

But I'm surprised the last 2 yrs of being gluten-free wouldn't have improved the GERD?  Maybe the damage had already been done??

 

I have a follow-up appointment with my Dr. next Thurs. to go over the biopsy results more thoroughly and to discuss the Barrett's.  She also wants to do more testing, including testing for small intestinal bacterial overgrowth, doing a CT scan of my abdomen, and possibly the camera pill to see the rest of my small intestine.

 

My Dr. thinks it's very possible that I have celiac disease based on my positive gene test, weight loss, signs of malabsorption, the fact I feel *so* much better since going gluten-free (despite the recent symptoms, I'm much better than I was 2 yrs ago!), and my family history of autoimmune disease.  I also had a bone density screening 15 yrs. ago that showed osteopenia (need to ask GI Dr. about a DEXA) and I had scoliosis when I was a kid which I read is connected to celiac.  The Barrett's esophagus seems to be related to celiac, too.

 

Looking back, I had "stomach issues" starting when I was 8 yrs old (1980) and I had some testing done (I only remember the barium swallow and my mom can't remember what I was tested for!) that didn't show anything.  I'm wondering if I've had celiac all along--esp. since I have Barrett's and I read that it takes 10+ yrs of severe GERD to develop that.

 

(I realize I could have other food intolerances, too, and I'll talk to my Dr. about that.  I do not eat dairy or soy which I know are often not tolerated by celiacs.)

 

It sounds like my Dr. wants to do the camera pill even knowing I've been gluten-free for 2yrs.  I told her I think I was gluttened while in Mexico in Feb. and I just found out the Advil Liqui-Gels I was taking for headaches for the last year has gluten in it (don't know why I never checked before taking it!!), but I don't know if that would be enough to cause villous atrophy.  I think she wants to check my small intestine anyway, but I'm wondering if this might be an opportunity to do a gluten challenge and get a definitive Dx??  I'm really apprehensive about the idea of consuming gluten again, but I really would like the validation from a Dr so I can say "I have celiac disease" esp. when talking to other people about why I can't eat this or that (I know you all can relate to that!). 

 

What do you all think about doing a gluten challenge before the camera pill?  I'm thinking since it's looks at your whole intestine (something like 50,000 pictures!) vs. just a few biopsies of a small area, this might be my best chance at getting a diagnosis.  I realize a negative diagnosis doesn't mean I don't have celiac, but I'm thinking this might be my only and last chance at getting a possible Dx! 

 

Thanks for letting me share my story and ask my question!  Sorry it ended up not being short after all! 

 

 

Sorry, for your extreme fatigue and hope you will soon be on the mend.  I sent you a private message. 

 

Diana

[alabama girl]

Hi Kitty,

Well first you need to understand about me that I am not a person that particularly has to have a diagnosis from a doctor (unless I'm dying!(ha)).  Your doctor's findings would be ENOUGH for me.  I think it clearly points to celiac, and yes, could be Hashimoto's and could be some diverticulosis in your colon from having GERD for so long.  I would have to ask the question, myself, of how conclusive will the camera pill really be?  I guess I am just more holistic and I don't like tinkering around invasively and stirring things up needlessly.  As far as what people think about what I eat or don't eat, that's my business and none of theirs!  I've never been diagnosed formally as celiac but my colon swells up all the way from my throat down to my anus, so I know by that.....and I get left sided pain.....actually, I get a lot of symptoms that you get....tremendous fatigue, itching everywhere, my esophagus goes into spasms and I get gastritis as well.  I am positive that I have a vitamin D deficiency because I had tailbone pain until I got started on Vitamin D and in the sun more.  I have some horrible malabsorption.....like certain foods will pass on through quickly.  I know staying gluten free is the pits, especially, if you're not sure that you are, but for myself, I don't have to be sure.....I KNOW!  I figure I could have Hashimoto's too since my mother has hypothyroid......but I have found that to stay gluten free takes care of all of my stuff and taking the vitamins D, E, B complex and eating a raw carrot every day......plus for me, I only use two oils.....extra virgin olive oil and coconut oil (that's it!) and I watch my consumption of wheat, dairy, soy and corn and sometimes even rice (all grains).....I eat mainly rice and potatoes.  I just recently found some "hidden gluten" in my shampoo and conditioner and hair color.  I know a lot of docs say only worry about what goes  down your mouth but I am a firm believer that what goes on your skin is also absorbed into your body, so you might check those things out.....and things like your soap, deodorant, laundry detergent, house cleaners, pesticides, etc.  I've had a hard time figuring out if it is just celiac or some chemicals too.....so I've just treated myself for both....staying away from chemicals/processed foods and gluten.  So many inflammatory diseases and inflammation problems are even being recognized now by the medical community as being caused by chemicals/pesticides.....who knows maybe even celiac is the way our flour is processed.  I think most folks would do well to take note of how many chemicals they are consuming daily, whether they are celiac or not! 

[GFinDC]

Hi Kitty,

 

One advantage of the pill cam is it can take pictures all the way through the  GI system.  An endopscopy or colonoscopy can only see 4 to 5 feet into the system from either end.  So it won't show anything in the intervening areas, which is quite a lot of area!  Pill cams can't take biopsy samples so unless damage is visible on the pictures it is missed. Still it is probably worthwhile since you are still having symptoms.  I don't think a gluten challenge makes sense tho.  You are trying to determine what is bothering you now right?  If you do a challenge and cause lots of inflammation and damage, it may hide or obfuscate the problem are you are wanting to find.

 

Have you tried eliminating other possible food triggers?  Many of us have additional food intolerances beyond gluten.

 

You are right, many people are trying the gluten-free diet now.  I think that makes it more acceptable in a way, since many people are familiar with it now and people asking for gluten-free food is not so unusual anymore.  Not only gluten, but many people avoid other foods like peanuts or eggs or soy or other things.  Would you feel irritated at a diabetic who asked if their food had sugar in it?  I don't think you would.  Medical conditions are not a choice we make (usually), and people are often very understanding in reality.  There are few hose-heads around always, but they can always go get a life.  If anyone will have them that is!