Is It Celiac? Also, Need Advice Re: Going gluten-free

[agape30]

Okay, I'm confused. I've had a number of GI problems on and off for most of my life (and I'm 30). When my sister was diagnosed with Celiac a few months ago, although I had different symptoms from her, decided I wanted to get tested and the GI doctor I chose agreed.

Results: My blood work came back normal

I then had both a colonoscopy and endoscopy. The sprue were not flattened and the pathology report came back that I did not have Celiac Disease and I was instructed on what to do for GERD and IBS (I was diagnosed with the former from the endoscopy--although I have no GERD symptopms!) THEN...just as I'm about to leave the PA's office, she notices that there's a four-page attachment of explanations. After I convinced her I certainly ate gluten prior to the testing (and a lot of it--was afraid I would never have my fav foods again), she interpreted the findings that I was "at-risk"/predisposition to Celiac. She was confused with the report and said she had seen nothing written up that way. The one thing she said that was noteworthy re: pathology report was some lymphocytes in my colon...I've never heard of that being related to Celiac, but she called me later that day after talking with the GI doctor and he thinks I might have early Celiac. They then told me to forget the drug they wanted me to take for GERD (and not worry about refraining from caffeine, citrus fruits, tomatoes, etc.) and to try going gluten-free for at least one month to see if that helps. I asked if she wanted me to call after one month and she said I "can."

I certainly feel more confused than ever and feel I'm left hanging. She also did not direct me to a nutritionist. Would that be wise?

It's only my second day going gluten-free and my stomach is continuing to hurt like it normally does, but then she told me not to expect anything until at least two weeks.

I've signed a consent form for the test results to be faxed to my sister's GI doctor to see what he makes of all of this. I don't have the characteristic diarrhea and weight loss (the opposite for both), but stomach pain, lots of tingling in the extremities, sleepiness/fatigue, and even some loss of coordination.

Any help?

Also, any basics I need to know about going gluten-free? I'm especially interested in the following:

1) list of any medications (prescription and OTC and vitamins) that contain gluten or how to find this out

2) a decent bread. I live in a city, and there are some health food stores, but the bread I found was really hard and tasted stale. Is there nothing better?

3) What about mouthwashes and toothpaste? chapstick or lipstick? Anything I need to be concerned?

4) What about frozen veggies or frozen chicken if there is no sauce? I understand about cross-contamination issues as well as that sometimes the conveyor belts are dusted with gluten for cleaning purposes. My sister has contacted a number of companies, but unfortunately, they either never got back to her or simply said, "look at the ingredients." Anyone reacted to plain frozen veggies (or fruit) or the like?

I know this was a long post, but I'm at a loss of what to think b/c I was told two weeks ago my results were negative for Celiac! (and hence I went out and bought food containing gluten), so it's frustrating having been informed two days ago that I MIGHT have Celiac Disorder, and their reasons for thinking so don't make sense to me.

Any help would be greatly appreciated.

Have a blessed day!

[ang1e0251]

Welcome to the Forum!!

You are one of the lucky ones, you were diagnosed before any significant damage. I wish I had been. You are now in a position to heal yourself and your sister sounds like a great family rescource.

Many large chain grocery stores have gluten-free shopping lists on their websites that you can print out to help you shop when you are starting out. In my area, Martins grocery stores have one. These are very helpful as you learn. But there is no substitute for reading labels, do it every time as companies change their formulas frequently. Frozen vegetables with no sauces should be OK for you. Check the label to be sure. Eating products made in a shared facility is a personal decision, some folks do, others don't. I don't because I seem to be sensitive to that. I would say to start your diet you may just want to eat simple whole foods in the beginning just to give your body a rest.

Bread. That's a tough one. I just mostly don't eat it. I can make it myself but it doesn't digest too well for me. I usually have corn tortillas in any case where I would normally eat bread. Others have reported they like the Kinnikinic brand. I haven't tried it.

Drugs and supplements are tricky. I mostly have to call about those. I believe Gluten Free Indy has a list on their website that could help you. Personal care products are another controversy. Seems some folks react to gluten in them and others don't. I do react so I buy products withoout gluten.

I hope this helps you. Keep asking more questions. Someone here always has an answer or at least an opinion!

[agape30]

Welcome to the Forum!!

You are one of the lucky ones, you were diagnosed before any significant damage. I wish I had been. You are now in a position to heal yourself and your sister sounds like a great family rescource.

Many large chain grocery stores have gluten-free shopping lists on their websites that you can print out to help you shop when you are starting out. In my area, Martins grocery stores have one. These are very helpful as you learn. But there is no substitute for reading labels, do it every time as companies change their formulas frequently. Frozen vegetables with no sauces should be OK for you. Check the label to be sure. Eating products made in a shared facility is a personal decision, some folks do, others don't. I don't because I seem to be sensitive to that. I would say to start your diet you may just want to eat simple whole foods in the beginning just to give your body a rest.

Bread. That's a tough one. I just mostly don't eat it. I can make it myself but it doesn't digest too well for me. I usually have corn tortillas in any case where I would normally eat bread. Others have reported they like the Kinnikinic brand. I haven't tried it.

Drugs and supplements are tricky. I mostly have to call about those. I believe Gluten Free Indy has a list on their website that could help you. Personal care products are another controversy. Seems some folks react to gluten in them and others don't. I do react so I buy products withoout gluten.

I hope this helps you. Keep asking more questions. Someone here always has an answer or at least an opinion!

Thanks for your help/encouragement. I must be honest, though---I was hoping you or someone would've said, "ya know, it doesn't look like Celiac to me!" lol

[mushroom]

I don't have the characteristic diarrhea and weight loss (the opposite for both), but stomach pain, lots of tingling in the extremities, sleepiness/fatigue, and even some loss of coordination.....

Thanks for your help/encouragement. I must be honest, though---I was hoping you or someone would've said, "ya know, it doesn't look like Celiac to me!" lol

What? You want us to lie to you???

Sorry, but for a lot of us, weight gain, constipation, tingling, numbness, ataxia, are classic signs of celiac. It is a master of disguise and presents itself in so many different forms to prevent us from being diagnosed. You will find a goodly percentage of folks on here who have had to diagnose ourselves because our doctors felt we did not have the "classic" signs of celiac, i.e., what they had been taught.

I agree with the previous poster--you are lucky to have received an early diagnosis.

Gluten-free living takes a little while to master and a while usually to show positive response, but it is definitely worth it. AND you have a sister to help you. Good luck!

[flteacher]

Okay, I'm confused. I've had a number of GI problems on and off for most of my life (and I'm 30). When my sister was diagnosed with Celiac a few months ago, although I had different symptoms from her, decided I wanted to get tested and the GI doctor I chose agreed.

Results: My blood work came back normal

I then had both a colonoscopy and endoscopy. The sprue were not flattened and the pathology report came back that I did not have Celiac Disease and I was instructed on what to do for GERD and IBS (I was diagnosed with the former from the endoscopy--although I have no GERD symptopms!) THEN...just as I'm about to leave the PA's office, she notices that there's a four-page attachment of explanations. After I convinced her I certainly ate gluten prior to the testing (and a lot of it--was afraid I would never have my fav foods again), she interpreted the findings that I was "at-risk"/predisposition to Celiac. She was confused with the report and said she had seen nothing written up that way. The one thing she said that was noteworthy re: pathology report was some lymphocytes in my colon...I've never heard of that being related to Celiac, but she called me later that day after talking with the GI doctor and he thinks I might have early Celiac. They then told me to forget the drug they wanted me to take for GERD (and not worry about refraining from caffeine, citrus fruits, tomatoes, etc.) and to try going gluten-free for at least one month to see if that helps. I asked if she wanted me to call after one month and she said I "can."

I certainly feel more confused than ever and feel I'm left hanging. She also did not direct me to a nutritionist. Would that be wise?

It's only my second day going gluten-free and my stomach is continuing to hurt like it normally does, but then she told me not to expect anything until at least two weeks.

I've signed a consent form for the test results to be faxed to my sister's GI doctor to see what he makes of all of this. I don't have the characteristic diarrhea and weight loss (the opposite for both), but stomach pain, lots of tingling in the extremities, sleepiness/fatigue, and even some loss of coordination.

Any help?

Also, any basics I need to know about going gluten-free? I'm especially interested in the following:

1) list of any medications (prescription and OTC and vitamins) that contain gluten or how to find this out

2) a decent bread. I live in a city, and there are some health food stores, but the bread I found was really hard and tasted stale. Is there nothing better?

3) What about mouthwashes and toothpaste? chapstick or lipstick? Anything I need to be concerned?

4) What about frozen veggies or frozen chicken if there is no sauce? I understand about cross-contamination issues as well as that sometimes the conveyor belts are dusted with gluten for cleaning purposes. My sister has contacted a number of companies, but unfortunately, they either never got back to her or simply said, "look at the ingredients." Anyone reacted to plain frozen veggies (or fruit) or the like?

I know this was a long post, but I'm at a loss of what to think b/c I was told two weeks ago my results were negative for Celiac! (and hence I went out and bought food containing gluten), so it's frustrating having been informed two days ago that I MIGHT have Celiac Disorder, and their reasons for thinking so don't make sense to me.

Any help would be greatly appreciated.

Have a blessed day!

WOW agape30, we must have the same Doc. I had almost the same thing happen to me a month ago, She told me to go gluten-free for about 6 weeks. when I asked if I needed to come back for a follow up she replied, if you want to. My celiac blood panel came back neg. the biopsy from the "comment report" section of the report stated I had early signs of C. My pre Gluten symptons were not nearly as severe as most on this forum. Gastro symptoms on and off, and headaches. The GI accidently found the "PRE CELCIAC" when she went looking (endoscope) for a hiatal hernia, which I have a 5 cm one. She took several biopsies while in there. Here's the kicker, On my way to the surgeon consult (to repair the hiatal hernia) I picked up the entire test report packet from my GI's office. While in the waiting room at the surgeons office I decided to read my reports. The endo report was 1st in with the early C diagnos. then the page with the blood work that was neg. the DR. had a handwritten note that read "call patient ASAP, tell her to stop gluten-free diet." that was 1 week before I saw it with my own eyes did I get a call? NO. I drove back to the GI office waited w/O appointment, was visably upset by all office and patients in waiting room. The Dr. beat around the bush, told me I wasn't supposed to see that and to stay on the gluten-free diet. She was sending my results to a celiac specialist and would get back with me. Cause I just love being on the gluten-free diet so much NOT!! That was 2 weeks ago, not a word. I have 2 weeks to go on her prescribed gluten-free and will wait for that follow up. Can someone please give me your thoughts on this? Since my pre gluten-free symptoms were occasional, severe heartburn was due to Hiatal hernia. However, I have not had 1 headache since gluten-free. I know, it's probably a no brainer here, thanks for letting me vent on the stupidity of docs out here.

[agape30]

WOW agape30, we must have the same Doc. I had almost the same thing happen to me a month ago, She told me to go gluten-free for about 6 weeks. when I asked if I needed to come back for a follow up she replied, if you want to. My celiac blood panel came back neg. the biopsy from the "comment report" section of the report stated I had early signs of C. My pre Gluten symptons were not nearly as severe as most on this forum. Gastro symptoms on and off, and headaches. The GI accidently found the "PRE CELCIAC" when she went looking (endoscope) for a hiatal hernia, which I have a 5 cm one. She took several biopsies while in there. Here's the kicker, On my way to the surgeon consult (to repair the hiatal hernia) I picked up the entire test report packet from my GI's office. While in the waiting room at the surgeons office I decided to read my reports. The endo report was 1st in with the early C diagnos. then the page with the blood work that was neg. the DR. had a handwritten note that read "call patient ASAP, tell her to stop gluten-free diet." that was 1 week before I saw it with my own eyes did I get a call? NO. I drove back to the GI office waited w/O appointment, was visably upset by all office and patients in waiting room. The Dr. beat around the bush, told me I wasn't supposed to see that and to stay on the gluten-free diet. She was sending my results to a celiac specialist and would get back with me. Cause I just love being on the gluten-free diet so much NOT!! That was 2 weeks ago, not a word. I have 2 weeks to go on her prescribed gluten-free and will wait for that follow up. Can someone please give me your thoughts on this? Since my pre gluten-free symptoms were occasional, severe heartburn was due to Hiatal hernia. However, I have not had 1 headache since gluten-free. I know, it's probably a no brainer here, thanks for letting me vent on the stupidity of docs out here.

Hi FL teacher,

Sorry to hear you too are going through very similar issues as I am. I had previously thought any GI should've been qualified to diagnose or R/O Celiac Disease after having results from blood tests and endoscopies. Have you heard from the Celiac specialist yet? I'd keep calling the doctor...So you had no gastro-issues before? If you did, have they been helped at all going gluten-free? I told one of my friends with Celiac how my doctor wanted me to go gluten-free at least a month, and she strongly encouraged me to go gluten-free for at least 3 months! I'm assuming I'm to then incorporate gluten and see if my body reacts? (And I will definitely have my fav food with gluten as it may be my last!) It's frustrating to know so many of us get thrown out there with little understanding of what's been going on with our own bodies. I am expecting to hear back from the second doctor this week. If you don't hear from the Celiac specialist, you may want to find another doctor or at least a consult/2nd opinion.

And to Mushroom, of course I want people to be honest on here, but the very real possibility of this diagnosis is so new for me. Isn't it okay to hope the Drs. have the wrong diagnosis or to daydream about them having switched the diagnoses/pathology reports?

And I am feeling a little better now that I found a few good gluten-free products. But I am a bit worried about going out to eat on Valentine's Day. At least I live in a city and have some gluten-free options. I love Carabba's and was ecstatic to see my fav chicken dish on their gluten-free menu....then I saw that everything (all their gluten-free dinners) are grilled. Hoping for no cross-contamination. (So maybe we should try PF Chang's or Boneheads??)

All the best to each of you...