I Need Help From All Of You Experts Out There!

[glutenfreeheather]

I am 25 years old was diagnosed with celiac Feb of 2005 after being mis-diagnosed with IBS for 10 YEARS!! In the past 7 months, I have been through "the sample", blood test, colonoscopy, barium swallow x-ray, ultrasound of the gallbladder, and a biliary scan of the gallbladder. After all that testing, turns out that the blood test revealed that I have celiac and the other tests were negative. Praise the Lord!!

They first put me on Bentyl and I was useless at work while on it. I felt disorganized, sleepy, forgetful, etc. and to top it off, I was still having severe attacks! Next they put me on Levsin...HORRIBLE!! Then I was on 5 mg of Pamine Forte and that made me CONSTIPATED like nothing I've ever experienced. So, now I'm on 2 mg of Pamine along with Prevacid along with a gluten-free diet and I'm doing GREAT!! I feel the healthiest I've been in many years!

My GI spends only like 5 minutes with me each visit though and I drive an HOUR to get to his office! Anyone got any solutions for how to deal with this? I mean I have learned more from this site than from any of my encounters with him! I still don't know much about my disease and about long-term effects. My husband goes with me each time and gets mad each time because the GI is so fast with me. I take a list of questions, but never get to ask them because he helps me off the examining table and rushes me to the nurse to check out after probably 5 minutes. I guess I should just be glad that he has run out of tests to rush me to have done. Anyone got any advice for me?

I mean I have serious questions like….Can I have kids? How do I lose weight on a gluten-free diet? What are the long-term effects of this? Will my kids definitely have this? Etc….

Also, he has taken me completely off of raw veggies and fruit until my “intestines heal”. Anyone else have this order from their GI? How long does it usually take before you can return to eating them? (It really limits my options!).

[jenvan]

Heather-

welcome to the board! we have some simliarities i think. i was misdiagnosed with IBS for about 13 years or so! and i was diagnosed in feb of 2005 too (i'm 26) Previous to my celiac diagnosis I took bentyl and levsin--and like you--they only thing they did was make me feel tripped out! Do you have relux or an ulcer too? Just wonder why you are taking Prevacid. (I used to take that oo : ) I am glad to see you are feeling so much better! Why are you taking the Pamine? Are you still having issues? Since it is an antispasmodic, I think it really only has a peripheral effect on Celiac issues. I would think if you have noticed such improvement in how you feel that you should be able to go off of both of those soon. After my medical history, one of the conclusions I’ve come to is the less medication—the better!

On your gi doc--you have 2 options as I see it. One is to try and find another gi doc. You can speak your family doctor and get referrals from him or her and then call these other gi offices and try and quiz them to get a sense of their celiac knowledge--ask if they deal with it frequently, how many other patients with celiac they have. You could also seek out a local support group and see if others have a doc to recommend in the area. That is how I found my latest gi doc.

Second option is to stick with him and to be fierce about demanding the kind of care you deserve. Meaning you or your husband will have to be willing to be bold and insist that he not leave until he has answered your questions. That is your right--you and your insurance company are paying for his services. I'm sure you already know that we have to be our own advocates most of the time!

As for kids--it is very likely you can have kids. There is somewhat of an connection to fertility issues with celiac, but if you are fiercely gluten-free, then your body should heal and you should be able to get preganant--barring no other issues, of course. One of my good friends who is also a celiac recently got pregnant--and not while trying...so mostly good news there! There is a chance your kids may have it, but there is no way of telling. I'd say from my interactions and reading that it is probably less likely that they will, but we aren't able to really predict that. There are many here who do you have multiple family members with Celiac. As for myself, the rest of my family got tested, and I am the only one.

The longterm effects are first off--that you will always have this disease and must adhere to this diet forever. And you need to be very vigilant. Period accidents or intentional splurges can be as damaging as not following the diet at all. There are a slew of other illnesses/diseases associated with Celiac, and the longer you go undiagnosed, the higher your chances of developing one. But if you are not noticing any other issues right now, I wouldn't pursue investigating something else. Just stick with the diet.

Do you feel like you have a good handle on forbidden foods and ingredients? There are a ton of gluten-free food lists and resources myself or another can pass along if you need. Do you need to lose weight? There definitely can be a tendency to gain weight on the gluten-free diet—really b/c your body is healing and probably absorbing more than it did previously. Keeping down your gluten-free carbs and trying to stick with leaner meats, veggies and fruits should help control weight. Ck out these two threads on gaining weight:

Open Original Shared Link

Open Original Shared Link

As for the raw veggies…I have rarely heard of other doctors suggesting leaving them out. There is another more restrictive diet some have tried here, called the Specific Carbohydrate Diet, that suggests not eating raw veggies/fruits initially, until healing has started…but other than that I haven’t really heard of it. I would do what you feel is right. If you notice raw fruits and veggies bothering you, then leave them out for the time being, and try to reintroduce later. If they aren’t bothering you, then I would say you’re probably okay.

This was long but hope it helps!! Welcome again

[glutenfreeheather]

Thank you SO much!! You don't know how much I appreciate all of your advice and kind response! I have felt completely lost and so alone with this for the past 7 months so it is good to hear from someone who understands and can offer advice. I will definately try to be more firm with my doctor when I go back in October and I know if I don't that my husband will for me. After we left last time, my hubby told me that he wanted to put his chair in front of the door to keep my doctor from leaving until I was good and done talking to him (he was joking, of course). I am glad you mentioned about my meds, because honestly, I don't know why I am taking them or what they are for. I have read over and over that the great benefit of having a disease like celiac is that you can control it by diet and not meds so I've wondered why I'm on them but haven't had the chance to ask that question, of course. I will do so in October though!

About my weight....I actually am very overweight and my GI told me that my body has responded to the celiac/malnutrition this way all these years. I have struggled with weight and had previously had my thyroid checked and been tested for diabetes and both were negative. I was glad to know what has been going on all these years but I've read that most people are very thin and underweight with celiac. Hmmm. Guess I should start a new post asking that.

Thanks again for being so nice and welcoming! I pray that God will continue to bless you in your gluten-free journey!

[thomas3000]

Find another doc quick!! I would do a comprehensive stool analysis to find out if you have any other things going on. If they find something, you can treat it and completely get your health back. Best wishes

[glutenfreeheather]

Thanks everyone!!!

Keep the advice coming!!

[julie5914]

Hey - you sound just like me! And probably a lot of other people on here...

I am also 25 and was misdiagnosed with IBS. I also have trouble losing weight - seems to be how my bosy responded as well. My doctor was not that fast with me - in fact I was extremely happy they knew what celiac was at all, but they were not the best either. They didn't even look into other tests like bone density to see if something could help me along with the healing or talk to me about how long it might to heal, etc. Course I saw the NP and not the doc. She was an excellent NP, better than my fam doc, but hopefully I will get more info when I see the actual gastro doc next month.

I would definitely see if you can get another GI doc. It is unacceptable and his fault for making you feel rushed like that. Where do you live? Maybe you should check out the doctors board. I would also have to drive an hour to see a specialist in my network. So I see one out of my network. Screw the insurance - this is my body, and God will help me find a way to pay for it.

Keep nosing aroung these boards too - they are absolutely the best thing in the world. If I had any money left after these doctor visits, I would give it to Scott Adams!

I've never heard of the veggies thing. I am very impatient, but I think the best thing is to stay strict gluten-free, avoid eating out and just give it time. I really wouldn't even try losing weight just yet. Your body is already malnourished, and adding extra restrictions to a gluten-free diet can be asking for failure.

This is the longest post ever, but to give you idea - I usually eat fruit for breakfast or gluten-free waffles when I'm lucky and have them. For lunch I have leftover from last night's dinner or I have something like frozen veggies, canned veggies and rice, or gluten-free pasta with sauce. I have fruits and veggies for snacks. For dinner we try to make something with meat. Chicken with potatoes, tomatoes, corn and lima beans in a pot with chicken broth and spices makes Southern Chicken Stew, my favorite. We usually end up making some variation of that or something stir fry with gluten-free soy sauce.

I hope some of this helps. I can be frustrating sometimes with so little research out there and so little support from the med community. And so little people knowing about it! But the feeling better is worth it!

[glutenfreeheather]

Hey - you sound just like me! And probably a lot of other people on here...

I am also 25 and was misdiagnosed with IBS. I also have trouble losing weight - seems to be how my bosy responded as well. My doctor was not that fast with me - in fact I was extremely happy they knew what celiac was at all, but they were not the best either. They didn't even look into other tests like bone density to see if something could help me along with the healing or talk to me about how long it might to heal, etc. Course I saw the NP and not the doc. She was an excellent NP, better than my fam doc, but hopefully I will get more info when I see the actual gastro doc next month.

I would definitely see if you can get another GI doc. It is unacceptable and his fault for making you feel rushed like that. Where do you live? Maybe you should check out the doctors board. I would also have to drive an hour to see a specialist in my network. So I see one out of my network. Screw the insurance - this is my body, and God will help me find a way to pay for it.

Keep nosing aroung these boards too - they are absolutely the best thing in the world. If I had any money left after these doctor visits, I would give it to Scott Adams!

I've never heard of the veggies thing. I am very impatient, but I think the best thing is to stay strict gluten-free, avoid eating out and just give it time. I really wouldn't even try losing weight just yet. Your body is already malnourished, and adding extra restrictions to a gluten-free diet can be asking for failure.

This is the longest post ever, but to give you idea - I usually eat fruit for breakfast or gluten-free waffles when I'm lucky and have them. For lunch I have leftover from last night's dinner or I have something like frozen veggies, canned veggies and rice, or gluten-free pasta with sauce. I have fruits and veggies for snacks. For dinner we try to make something with meat. Chicken with potatoes, tomatoes, corn and lima beans in a pot with chicken broth and spices makes Southern Chicken Stew, my favorite. We usually end up making some variation of that or something stir fry with gluten-free soy sauce.

I hope some of this helps. I can be frustrating sometimes with so little research out there and so little support from the med community. And so little people knowing about it! But the feeling better is worth it!

<{POST_SNAPBACK}>

Thank you so much for your kind response! I'm still having trouble with eating out. With our crazy schedules, my hubby and I were surviving off of being able to eat "on-the-run" and avoided cooking at all costs. We've learned that you just can't do that when you're a celiac (or live with one). It's hard to adjust, especially since I've never really been a great cook. Being off of raw veggies and fruit has made it even worse because I feel like I have so little to chose from. I'm really struggling with what to eat, but keep telling myself that it will get easier. I've paid for several "gluten-free assumptions" on foods that I should have known better, but didn't check out completely. (For example, the Newman's Own cookies that are labled as wheat-free are in fact NOT gluten-free and the same with the puffins bars that I was living off of for breakfast). I guess you learn as you go.

You or someone else may know, but is chronic fatigue a symptom of celiac? I have like zero energy all the time. I have also had joint pain in my lower back, wrists, and one of my ankles. I have written this off as the result of my work or over-compensating when lifting or getting off the floor, but could this be a sign of other complications?

Help!!

[jenvan]

Heather, go here to read a list of illnesses that are often related with Celiac: https://www.celiac.com/st_main.html?p_catid...-12105112341.dc

Chronic fatigue is probably one of the more common effects from Celiac. That is one of the most persistent for me. I am still chronically exhausted and get run down easily. Many find this fatigue goes away in time...but it may take a while. And some of us seem to remain more fatigued than the average person. There are other avenues you may want to eliminate as related causes for the fatigue: b12 deficiency and anemia. I see you eliminated thyroid already.

I encourage you to read the post I gave you too on a recent thread for overweight celiacs...there are many on this board.

Joint pain is also often related to Celiac. I can't think of anyone in particular at this moment--but others here suffer from that. You could try and do a search for past posts on the the topic.

Quick foods as alternatives for eating out. Have you tried any of these below? (Also--a good idea is to make large quantities of food at a time and freeze leftovers for easy reheating).

Thai Kitchen--lots of gluten-free thai type dishes...really good. You just add the meat you want, noodles, sauce etc are included. Open Original Shared Link

Amy's makes quite a few frozen dinners and a cheese pizza that are gluten-free. Amy's also makes quite a few gluten-free canned soups that are good too. You can see their products and get their gluten-free list here. Open Original Shared Link Amy's also makes some good gluten-free soups you can heat quickly.

Really yummy gluten-free rice dishes. You can serve as a side or add a meat/veggie and eat as a meal-- Open Original Shared Link

If you have a Trader Joe's by you-they have several gluten-free frozen stirfries and dinners. Just ck the gluten-free list on the website--east or west coast. They also have chicken sausage that is awesome!

Gluten free pantry makes some good skillet meals. Just add meat or beans. We really like the stroganoff meal. Open Original Shared Link free.com/glu/showprod.cfm...jectGroup_ID=74

Have you tried Tinkyada's gluten-free pasta yet? It is great and you can make a ton of quick meals with it.

Dinty Moore beef and chicken stew are gluten-free--just throw them in a pot to heat up.

Other quick meal ideas--tacos and taco salads are made gluten-free easy, rice and beans (you can get micro rice and canned beans-just heat with spices), lasagna, pasta dishes, stirfries, hamburger/fries (love Alexia fries-gluten-free!), rice/quinoa pilafs (there are a lot of quick/precooked rices out now), chips/salsa, we eat "breakfast for dinner" sometimes--gluten-free pancakes (Pamela's mix is our favorite) w/ meat/veggie omelettes, frozen veggies are usually gluten-free and easy to prepare as a side, baked beans--(most of Bush's are gluten-free), sandwiches with gluten-free bread and miracle whip etc, Delmix has some gluten-free taquitos as well as costco beef taquitos, Dinty Moore microwave meals, Hormel Tamales, Lundberg Rice Sensations, Perdue Short Cuts, Sam's Club beef Taquitos...

[jenvan]

Ps-My dh loves the vols! And thanks for your hope of being blessed by God w/ the gluten-free journey I am a christian, so its a helpful reminder to try and pursue gratefulness in the midst of it all. However, I am currently at one of those weary points where I am ready for some changes! But it is always worthwhile to be helpful and encouraging to others... Hang in there--and remember "when it doubt--leave it out." PS-Try and carry gluten-free snacks with you so that you won't be tempted to eat something questionable when you're really hungry...

[glutenfreeheather]

Heather, go here to read a list of illnesses that are often related with Celiac:  https://www.celiac.com/st_main.html?p_catid...-12105112341.dc

Chronic fatigue is probably one of the more common effects from Celiac.  That is one of the most persistent for me.  I am still chronically exhausted and get run down easily.  Many find this fatigue goes away in time...but it may take a while.  And some of us seem to remain more fatigued than the average person.  There are other avenues you may want to eliminate as related causes for the fatigue:  b12 deficiency and anemia.  I see you eliminated thyroid already. 

I encourage you to read the post I gave you too on a recent thread for overweight celiacs...there are many on this board.

Joint pain is also often related to Celiac.  I can't think of anyone in particular at this moment--but others here suffer from that.  You could try and do a search for past posts on the the topic.

Quick foods as alternatives for eating out.  Have you tried any of these below?  (Also--a good idea is to make large quantities of food at a time and freeze leftovers for easy reheating).

Thai Kitchen--lots of gluten-free thai type dishes...really good. You just add the meat you want, noodles, sauce etc are included. Open Original Shared Link

Amy's makes quite a few frozen dinners and a cheese pizza that are gluten-free. Amy's also makes quite a few gluten-free canned soups that are good too. You can see their products and get their gluten-free list here. Open Original Shared Link  Amy's also makes some good gluten-free soups you can heat quickly.

Really yummy gluten-free rice dishes.  You can serve as a side or add a meat/veggie and eat as a meal--  Open Original Shared Link

If you have a Trader Joe's by you-they have several gluten-free frozen stirfries and dinners. Just ck the gluten-free list on the website--east or west coast. They also have chicken sausage that is awesome!

Gluten free pantry makes some good skillet meals. Just add meat or beans. We really like the stroganoff meal. Open Original Shared Link free.com/glu/showprod.cfm...jectGroup_ID=74

Have you tried Tinkyada's gluten-free pasta yet? It is great and you can make a ton of quick meals with it.

Dinty Moore beef and chicken stew are gluten-free--just throw them in a pot to heat up.

Other quick meal ideas--tacos and taco salads are made gluten-free easy, rice and beans  (you can get micro rice and canned beans-just heat with spices), lasagna, pasta dishes, stirfries, hamburger/fries (love Alexia fries-gluten-free!), rice/quinoa pilafs (there are a lot of quick/precooked rices out now), chips/salsa, we eat "breakfast for dinner" sometimes--gluten-free pancakes (Pamela's mix is our favorite) w/ meat/veggie omelettes, frozen veggies are usually gluten-free and easy to prepare as a side, baked beans--(most of Bush's are gluten-free), sandwiches with gluten-free bread and miracle whip etc, Delmix has some gluten-free taquitos as well as costco beef taquitos, Dinty Moore microwave meals, Hormel Tamales, Lundberg Rice Sensations, Perdue Short Cuts, Sam's Club beef Taquitos...

<{POST_SNAPBACK}>

WOW...Thank you again Jen...you are awesome and have a plethroa of knowledge!! You probably don't even know just how helpful you've been to me. It's easy to get depressed when you feel like your whole world has been turned upside-down. I've been struggling through that lately. My hubby is a youth minister and we are both bible college grads and it still has been a difficult journey for us both the past 7 months spiritually not to mention physically, emotionally, and financially. But, through it all we just keep hoping and trusting that this will get easier and that I will be healthier in the long run. I know that God will work through this for good and that is what keeps me encouraged day-to-day! I can now understand that the fact that I am losing weight is a blessing to this "curse" in and of itself and I know that feeling better is much better than eating doughnuts or breads and getting sick all the time. I just can't wait for the feast in Heaven where we won't have to worry about gluten/wheat!!!!

I am going to look into the foods that you suggested!!! I am excited to expand my options and am consumed right now with searching through all of the past posts. I am learning so much and a lot of it has been from you!!! So thank you again for being so helpful and sweet!!

[BabySnooks]

I am 25 years old was diagnosed with celiac Feb of 2005 after being mis-diagnosed with IBS for 10 YEARS!!  In the past 7 months, I have been through "the sample", blood test, colonoscopy, barium swallow x-ray, ultrasound of the gallbladder, and a biliary scan of the gallbladder.  After all that testing, turns out that the blood test revealed that I have celiac and the other tests were negative. Praise the Lord!!

They first put me on Bentyl and I was useless at work while on it.  I felt disorganized, sleepy, forgetful, etc. and to top it off, I was still having severe attacks!  Next they put me on Levsin...HORRIBLE!! Then I was on 5 mg of Pamine Forte and that made me CONSTIPATED like nothing I've ever experienced.  So, now I'm on 2 mg of Pamine along with Prevacid along with a gluten-free diet and I'm doing GREAT!!  I feel the healthiest I've been in many years!

My GI spends only like 5 minutes with me each visit though and I drive an HOUR to get to his office!  Anyone got any solutions for how to deal with this?  I mean I have learned more from this site than from any of my encounters with him!  I still don't know much about my disease and about long-term effects.  My husband goes with me each time and gets mad each time because the GI is so fast with me.  I take a list of questions, but never get to ask them because he helps me off the examining table and rushes me to the nurse to check out after probably 5 minutes.  I guess I should just be glad that he has run out of tests to rush me to have done.  Anyone got any advice for me?

I mean I have serious questions like….Can I have kids?  How do I lose weight on a gluten-free diet? What are the long-term effects of this?  Will my kids definitely have this? Etc….

Also, he has taken me completely off of raw veggies and fruit until my “intestines heal”. Anyone else have this order from their GI?  How long does it usually take before you can return to eating them?  (It really limits my options!).

<{POST_SNAPBACK}>

Heather,

I know how frustrated you are. I am newly diagnosed in July 2005. You need to hear from others on this site who know more than I do. Regarding your GI doctor, the reason he rushes you could very well be that he is very uninformed about this disease. It helps to have a doctor who specializes in Celiac. Also, you may want to make an appointment with a nutritionist knowledgeable about Celiac. My GI doctor is very informed about Celiac, but his office nurse gave me a list of safe and forbidden foods and the list is out of date. It lists mustard and ketchup as forbidden, and they aren't!!! You willl get more information from this site than you ever will from the doctors. That is not to say you should not try to communicate with your doctor with your important questions. Maybe you could talk to his nurse and set up an appointment for more than 5 minutes. You need to be assertive with this doctor and get him to listen to your questions.

Hang in there!

Sharon

[glutenfreeheather]

Heather,

I know how frustrated you are.  I am newly diagnosed in July 2005.  You need to hear from others on this site who know more than I do.  Regarding your GI doctor, the reason he rushes you could very well be that he is very uninformed about this disease.  It helps to have a doctor who specializes in Celiac.  Also, you may want to make an appointment with a nutritionist knowledgeable about Celiac.  My GI doctor is very informed about Celiac, but his office nurse gave me a list of safe and forbidden foods and the list is out of date.  It lists mustard and ketchup as forbidden, and they aren't!!!  You willl get more information from this site than you ever will from the doctors.  That is not to say you should not try to communicate with your doctor with your important questions.  Maybe you could talk to his nurse and set up an appointment for more than 5 minutes.  You need to be assertive with this doctor and get him to listen to your questions.

Hang in there!

Sharon

<{POST_SNAPBACK}>

Thank you Sharon! You are right about learning from this site. I have become almost addicted to reading and searching this site over the past few days! And, it is so encouraging to hear from others, like yourself, who understand what this feels like and can provide insight or advice for what I'm going through!

You are also right about needing a nutrionist. I didn't know much about nutrition before diagnosis so I don't know why I think I can do it on my own now. The list my doctor gave me was outdated too. A friend at church works as a nurse and asked her nutrionist friend to give me a list and some tips and that helped some, but I probably need to sit down with someone and have them help me individually, face-to-face. Sigh. What a long journey this seems at times.

Thanks for your encouragement and advice !

[jenvan]

Heather-

where do you live in NC? just wondering...i'm going down there for a vaca next weekend..

[2old4]

Heather-

Welcome to the board! These guys have been a lifesaver to me these last few months. I don't post alot, but I read here almost everyday. I also have learned more here than I have from my gastro.

I have always had a small weight issue, but after having my beautiful baby boy

3 1/2 years ago I had really socked some on. I am happy to report, after being on the gluten-free diet for 3 months, I have lost 15 pounds effortlessly. I am hoping to take off another 25, but I am not worrying about it at all. I just decided, the heck with it, I just need to be able to eat something without getting sick. I started off simple: meat, potatoes, veggies, and slowly started to add in gluten-free pasta, gluten-free bread, although I'm sure my weight loss is due to the fact that I went from eating a sub sandwich 5 days a week, to having bread maybe twice. I feel better, I have alot more energy than I did in my 20's (I just turned 35) because I can tell the nutrients are getting in now, my fingernails are now growing, my hair stopped falling out, I'm not having "bone pain" in my legs anymore, I seem to be noticing more benefits all the time. Keep posting and take care of yourself, we'll help anyway we can.

[Sandy R]

I was struck by your post because of yourscripture from Jeremiah 29:11, it is my very favorite passage in the bible and I use it any time I give a gift or send a card.

My sister has recently been diagnosed as celiac she has classic symptoms anemia and weight loss-however I have never had these symptoms in fact for the last 6 years I have gained 30 pounds, but I have had all others and been "officially" diagnosed as IBS and fibromalgia..I would go to the doctor with my stomach so distented I could not wear normal cloths, I have chronic constipation and burping belching gas etc. yet when my GI did test he said I am NOT celiac gave me an enzyme and sent me on my way. I guess I just wanted to see if anyone can make suggestions as to what I should do next. I go to my internist on Oct. 14. Can any on suggest how to approach this with her.

I too am a christian my husband is a pastor in Spartanburg, South Carolina but we both grew up in NC. He is from Salisbury, I from a town not far from Charlotte and both our boys were born in North Carolina. Any way any suggestions will be much appreciated

Thanks

Zephaniah 3:17

Thank you SO much!!  You don't know how much I appreciate all of your advice and kind response!  I have felt completely lost and so alone with this for the past 7 months so it is good to hear from someone who understands and can offer advice.  I will definately try to be more firm with my doctor when I go back in October and I know if I don't that my husband will for me.  After we left last time, my hubby told me that he wanted to put his chair in front of the door to keep my doctor from leaving until I was good and done talking to him (he was joking, of course).  I am glad you mentioned about my meds, because honestly, I don't know why I am taking them or what they are for.  I have read over and over that the great benefit of having a disease like celiac is that you can control it by diet and not meds so I've wondered why I'm on them but haven't had the chance to ask that question, of course.  I will do so in October though!

About my weight....I actually am very overweight and my GI told me that my body has responded to the celiac/malnutrition this way all these years.  I have struggled with weight and had previously had my thyroid checked and been tested for diabetes and both were negative. I was glad to know what has been going on all these years but I've read that most people are very thin and underweight with celiac.  Hmmm.  Guess I should start a new post asking that.

Thanks again for being so nice and welcoming!  I pray that God will continue to bless you in your gluten-free journey!

<{POST_SNAPBACK}>

[glutenfreeheather]

I was struck by your post because of yourscripture from Jeremiah 29:11, it is my very favorite passage in the bible and I use it any time I give a gift or send a card.

My sister has recently been diagnosed as celiac she has classic symptoms anemia and weight loss-however I have never had these symptoms in fact for the last 6 years I have gained 30 pounds, but I have had all others and been "officially" diagnosed as IBS and fibromalgia..I would go to the doctor with my stomach so distented I could not wear normal cloths, I have chronic constipation and burping belching gas etc.  yet when my GI did test he said I am NOT celiac gave me an enzyme and sent me on my way.  I guess I just wanted to see if anyone can make suggestions as to what I should do next.  I go to my internist on Oct. 14.  Can any on suggest how to approach this with her.

I too am a christian my husband is a pastor in Spartanburg, South Carolina but we both grew up in NC.  He is from Salisbury, I from a town not far from Charlotte and both our boys were born in North Carolina.  Any way any suggestions will be much appreciated

Thanks

Zephaniah 3:17

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Thank you for your response...I don't know if I mentioned this earlier, but my hubby is a youth minister here in NC. We are both Bible College grads as well. Jer. 29:11 is my favorite verse and I have been teaching it to the teen girls in our youth group. It has comforted me throughout this whole process of being diagnosed with celiac.

As far as your situation, I'm not sure. I know that my mom is presently being tested and I have suggested that my sister get tested. My mom has suffered from many symptoms of celiac over the years but has been treated for IBS. She took the blood test at her general practitioners office, but he didn't know enough to diagnose her so he sent her to a GI and she will have that appointment in a few weeks. My sister doesn't have many symptoms at all so I'm assuming she is okay. I told her that it would n't hurt for her to get tested though. It could be that you have the gene but it hasn't been "triggered" yet. I know that for years my symptoms were mild most of the time and I would have bouts of severe attacks and that is why my general practitioner thought I had IBS (like my mom) and since I was in high school at the time he didn't treat it. He just told me to avoid fatty foods and fried foods. Great advise, eh?

If you haven't already, you probably need to request the blood test and then a biopsy via endoscopy. That is the test my mom is getting at the upcoming appointment and her GI said that would definately determine whether she has it or not. Regardless, I know that she carries the gene b/c my dad's family has NO GI issues and my mom's dad has always struggled with bowel/stomach issues.

You may need to find a GI who knows more about the disease. It could be that yours doesn't know much and that is why she dismissed your worries.

Good luck to you and God bless you!!

[julie5914]

Heather and Sandy,

A great Celiac doc is in Travelers Rest, SC. Their Web site is paradocshealth.com, where you can fill out their registration form and questionairre and send it in with all your medical records. Dr. Deihl will go over it all and then if they think they can help (which they probably can), they will call you up.

Dr. Diehl is a DO instead of MD, both are med docs that can prescribe stuff, etc., but a DO looks at the whole picture instead of specializing in one area like MDs do. I think she is a great diagnostitian. Like a lot of other DOs though, she does not accept insurance and does not allow pharmaceutical marketing in her office. She will give you a detailed receipt though with the codes the insurance will need, and you can file it on your own. I was a little suspicious before my first appt, worried that it was all natural hocus pocus stuff, but she is the real thing and very good at what she does. Just different from what I was used to - but in a very refreshing way.

She instructed me to go to www.functionalmedicine.org to find a doc with the same mind set that knows a lot about celiac in my area when she is done figuring out what all is up with me. If anyone knows anything fishy about this stuff too, though, please post - I will not be offended. I have not done extensive research on functional medicine or anything myself, I just am starting to form an opinion that it seems be a process that works for celiac.

[FaithInScienceToo]

Just wanted to say how happy I feel for you, Heather!

When I read threads like yours, I remember how it was for me when I began to heal.

Heavenly...

And, that's coming from someone who is 'spiritual, but not religious' ;-)

It's also SO nice to see "celiacs helping celiacs" - that's the motto of the Celiac Sprue Association, which you can become a member of, at:

Open Original Shared Link

Best wishes, Gina

[Lisa]

Heather-

where do you live in NC?  just wondering...i'm going down there for a vaca next weekend..

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Jen:

I'm in NC near the Outer Banks. Where are you going for vacation.?

Lisa B.

[Guest BellyTimber]

I was extremely emaciated from age about 5 to about 30, but since then considerably overweight as my body figured out how to "compensate".

I aim to go to Slimming World which has a convincing looking programme, allowing for adapting it to gluten-free-WF, and ignoring the way they push poisonous artificial sweeteners, but shan't do so yet, I shall wait till I'm better establsihed in my cooking habits.

There's a whole section in the forum about weight losing.