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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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Ladies, Gentleman, my fellow Celiacs, 

I need your help, please!! As of December 2015, my boyfriend got diagnosed with Celiacs disease and has not been able to cope and adjust to it. He tries- very hard- but for whatever reason his body still is not agreeing with him. He has no idea I made this account, but I need to try and research things that will help. It is really having an affect on his life, he is not himself anymore and it is definitely starting to take a toll on our relationship as well. 

As his girlfriend, I have tried a lot to help...even though there is not too much I can do. Instead of eating out, 95% of the time we cook together. I make sure everything I get him is gluten-free and I will randomly bake and cook him things, just so I know he has things to eat. My main concern, as well as his, is that his appetite is completely gone. He will wake up in the morning and can barely get himself to eat anything once 1 or 2 pm rolls around. He'll eat once a day, if that. He dropped about 20 pounds, too. He has tried probiotics, the only thing that it really helped was the vomitting...which still happens occasionally, just not as much. He also doesn't really like talking about the matter, especially with me. Whenever he brings it up and I try helping I get a lot of backlash. I know its hard to adjust too, but I am just trying to help.

 

What do you guys recommend? Going back to the doctors? Is there anything or any supplement any of you take that helps with your appetite? I need help!

 

Thanks,

A concerned girlfriend.

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I was diagnosed in December 2015 too.  It takes a lot of adjustment and honestly sometimes I just get depressed by not being able to do things I used to do.  My husband is very supportive but I have sometimes lashed out at him when he tries to be helpful.  It is just a lot to get used to and takes time.  Is he still having digestive symptoms or is the lack of appetite because he has not found foods that he really likes?  I know that I have not yet adjusted to a lot of the tastes of gluten free food and I prefer foods that I was always able to eat more than the gluten free variety of foods that I can no longer eat.  For instance, I like steak, potatoes, chicken, etc. better than gluten free breads and things like that.  Also, sometimes as we are healing people discover secondary food issues, like problems processing dairy and things like that.  So, unfortunately he may need to cut out more foods if he is still having digestive issues.

I know this is hard, but it might help if you just let him vent when he does talk about it instead of trying to fix it.  A sympathetic ear can go a long way.  You are doing everything you can to support him, but he has to adjust to a new lifestyle that can sometimes feel very isolating.   

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1 hour ago, glutenfreegirlfriend said:

What do you guys recommend? Going back to the doctors? Is there anything or any supplement any of you take that helps with your appetite? I need help!

Welcome to the forum :) this is a nice thing for you to do. I think every celiac would wish for a partner as supportive. 

First, neither you nor he should panic. At nine months in he's hopefully got a lot more healing to do, so more improvement may be around the corner.

Second, with just a few months since diagnosis, can you be quite certain that no gluten contamination is taking place? You'd be amazed at how sensitive people can get once they remove it from their diet. It also has  nasty habit of reappearing due to wooden spoons or non stick pans or maybe a rogue vitamin pill or supplement... It's in the most bizarre things also, so recheck that food cupbaord and make sure there's no way its getting in via a sauce bottle, crumbs on butter etc. Even kisses can be a carrier :( Check out this thread for some info:

I second the recommendation for this for instance: https://www.amazon.com/Real-Celiac-Disease-Melinda-Dennis/dp/1603560084

 

Once gluten has been eliminated you still need to give the body as good a chance of recovery as possible. Avoiding loads of gluten-free processed foods, esp grains. The first months after diagnosis are a healing time. His body has probably been starved of nutrients, and it may take time to start correcting levels and healing.

For me I have a decent multivitamin B supplement, fish oil and a probiotic each morning. I also try and eat pro biotics, making sauerkraut for instance. Omelettes are my breakfast champion now. You can stirfry veggies or meat for a filling and they supply protein and amino acids as well as being really filling. I eat lots of salads, with olive oil and cider vinegar. 

There's a chance your BF may need to cut out dairy, at least for awhile, it can be rough on the digestive system and he may be intolerant to it as well. I try to avoid it now as much as possible, although I cheat occasionally if ice cream is within reach...

A food diary may help track down any further problems or source of contamination. I found a seasoning mix with gluten only by referring to a diary I'd kept of what I'd eaten. 

Finally, a little more info may be helpful to us in responding. Is his lack of appetite due to not liking gluten-free food? Did it only happen after changing diet? The recovery process isn't usually a consistent upward curve, there are slowdowns and sometimes reversals, but long term it should be good news.  

If its gluten-free food for instance, then Paleo is naturally gluten free and there are substitutes for nearly any meal on the paleo recipe sites. You could check some of those out.

Best of luck!

 

 

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1 hour ago, Newly Diagnosed said:

I was diagnosed in December 2015 too.  It takes a lot of adjustment and honestly sometimes I just get depressed by not being able to do things I used to do.  My husband is very supportive but I have sometimes lashed out at him when he tries to be helpful.  It is just a lot to get used to and takes time.  Is he still having digestive symptoms or is the lack of appetite because he has not found foods that he really likes?  I know that I have not yet adjusted to a lot of the tastes of gluten free food and I prefer foods that I was always able to eat more than the gluten free variety of foods that I can no longer eat.  For instance, I like steak, potatoes, chicken, etc. better than gluten free breads and things like that.  Also, sometimes as we are healing people discover secondary food issues, like problems processing dairy and things like that.  So, unfortunately he may need to cut out more foods if he is still having digestive issues.

I know this is hard, but it might help if you just let him vent when he does talk about it instead of trying to fix it.  A sympathetic ear can go a long way.  You are doing everything you can to support him, but he has to adjust to a new lifestyle that can sometimes feel very isolating.   

He is still having some digestive symptoms, like sometimes he will eat and then 15-30 minutes after he doesn't feel well/sometimes actually vomits. For example, we one time made gluten free pasta with a brand new can of sauce. Within the hour, we went to the bathroom and vomited. But when he does- its only usually bile (?spelling, lol.) He has found SOME foods he enjoys that are gluten free, being italian- he really misses regular pastas and bread. I know he misses chicken- something he always used to eat in every style... But he is slightly scarred from it because last summer, whenever he would eat breaded chicken, he'd get sick and thought it was because he was allergic to chicken. Now we know it was the bread crumbs/breading on the chicken, but he is still hesitant to eat it.

 I know he has never had any issues with dairy prior to this- but his father and brother are lactose intolerant and avoid dairy in about 98% of their diets. The lack of appetite started roughly a few weeks after beginning the gluten free diet. It has progressively gotten worse, but he also has a lot of anxiety when eating, too. Which he says is because he gets anxious before he eats because he doesn't know if hell get sick or not.

I've told him that he should maybe check back with the doctor, since it has been a few months and voice his concerns as someone who is newly diagnosed. He told me yesterday he feels that it's going to be a hard few months for him and then said he doesn't want to talk about it- there is nothing to talk about. 

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53 minutes ago, Jmg said:

Welcome to the forum :) this is a nice thing for you to do. I think every celiac would wish for a partner as supportive. 

First, neither you nor he should panic. At nine months in he's hopefully got a lot more healing to do, so more improvement may be around the corner.

Second, with just a few months since diagnosis, can you be quite certain that no gluten contamination is taking place? You'd be amazed at how sensitive people can get once they remove it from their diet. It also has  nasty habit of reappearing due to wooden spoons or non stick pans or maybe a rogue vitamin pill or supplement... It's in the most bizarre things also, so recheck that food cupbaord and make sure there's no way its getting in via a sauce bottle, crumbs on butter etc. Even kisses can be a carrier :( Check out this thread for some info:

I second the recommendation for this for instance: https://www.amazon.com/Real-Celiac-Disease-Melinda-Dennis/dp/1603560084

 

Once gluten has been eliminated you still need to give the body as good a chance of recovery as possible. Avoiding loads of gluten-free processed foods, esp grains. The first months after diagnosis are a healing time. His body has probably been starved of nutrients, and it may take time to start correcting levels and healing.

For me I have a decent multivitamin B supplement, fish oil and a probiotic each morning. I also try and eat pro biotics, making sauerkraut for instance. Omelettes are my breakfast champion now. You can stirfry veggies or meat for a filling and they supply protein and amino acids as well as being really filling. I eat lots of salads, with olive oil and cider vinegar. 

There's a chance your BF may need to cut out dairy, at least for awhile, it can be rough on the digestive system and he may be intolerant to it as well. I try to avoid it now as much as possible, although I cheat occasionally if ice cream is within reach...

A food diary may help track down any further problems or source of contamination. I found a seasoning mix with gluten only by referring to a diary I'd kept of what I'd eaten. 

Finally, a little more info may be helpful to us in responding. Is his lack of appetite due to not liking gluten-free food? Did it only happen after changing diet? The recovery process isn't usually a consistent upward curve, there are slowdowns and sometimes reversals, but long term it should be good news.  

If its gluten-free food for instance, then Paleo is naturally gluten free and there are substitutes for nearly any meal on the paleo recipe sites. You could check some of those out.

Best of luck!

 

 

Gluten free foods are obviously not his food of choice, but given little to no option- he eats it. His lack of appetite is definitely from being diagnosed. He drinks a high protein, organic, gluten-free smoothie in the morning from Whole Foods/Trader Joes (not sure which). Then he usually eats one meal and that is about it. He will have an entire gluten-free meal in front of him and he just can't get himself to have the appetite to eat it. 

 

There are times where cross-contamination definitely has happened. Him and I both realized after he ate it- definitely a rookie mistake. But I would say he has gotten a lot better, as well as his family, with completely gluten free meals.

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When my mom and myself figured out it was mostly gluten that was making me go into "my" episodes, my mom decided it was time to go cold turkey for a few months to see how it goes.  Between November-mid-January, I cut out all sugars, diary, and caffeine, even chocolate which was hard.  I felt like a rabbit eating only veggies and meat during this time. :)  I started to slowly add in the diary and have found the delicate balance between enough dairy and too much dairy.  I still to this day have to be careful about the amount of dairy I ingest.  I no longer drink as much caffeine as this tends to make me more vulnerable to the episodes.  The diet I started on helped to kick start the healing process from being glutened for a long time.  I am now almost episode-free and found the triggers that make me go into an episode.  For me, the key was to listen what my body was telling me and being willing to stay away from those triggers as much as possible.  There are times my body goes haywire, but I usually can see what caused the episode.

It may help your BF to cut out anything processed or that has caffeine in it (as caffeine is a stimulant and may exacerbate his symptoms).  Would your BF be interested in going this route for a time to kick start his healing journey?

I think it's awesome to have such a support system by his side through this difficult time after the diagnosis.  As Newly Diagnosed stated in the post, a listening ear can go a long way.  There were times and still are, that sometimes all I would need was a listening ear letting me vent some of the frustrations of the day especially if it was a bad day.  As I started to see the symptoms reduce, I started to look forward to the good days more and more.  When those good days came around, I snatched them up and was thankful for the clear head and no fuzziness.  

Those days for your BF will come as well, and sometimes patience runs thin, but hang in there.  His body is adjusting and is not too thrilled about it right now.  Wish you all the best. 

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It’s only been about 4 months since my diagnosis and it sounds a lot like your BF’s. I did not have the vomiting, but did have diarrhea, reflux, blood in stools, rashes and no appetite. My biggest hurdle was, and although it has gotten better in the past two weeks, still is, the depression/anxiety. Symptoms of Celiac can be depression and I got it bad. I have missed work, had no sense of self-worth and figured I was a huge burden to my family and myself – “so what’s the use” attitude. I am getting counseling now which is helping. I also have full body muscle aches. My Dr. says I have Fibromyalgia, which I may, but it all started when I went Gluten Free. I joined this Forum and have gotten more good info and a better understanding of how Celiac can affect everyone differently. It sounds like your BF is unfortunately getting a big dose of symptoms. When diagnosed I always expected to go gluten-free and be cured. After the first 2 weeks I was still feeling bad and got frustrated. I was eating like your BF. I finally seen a nutritionist and she explained some things that made sense to me. If they are true or not, I don’t know, but it clicked with me. I was a big wheat eater leading up to diagnoses. Most bread/cereal/baked goods/flour is enriched with stuff. When you cut it out cold turkey, your body can reject that. Not to mention your carb intake drops tremendously. She had me up my carb intake (I hate gluten-free bread, unless toasted) and try and keep it in sync with my protein intake. I had to track “everything”. There is a phone app that helps you with this. After about a month I could go back and see what I ate leading up to a bad day, and more importantly what I was eating that lead up to a good day.  

I would continue educating yourself and him on every aspect of the disease, and realize there are a lot of folks in the same boat. If possible talk to some of them, I recently reached out to an old Army friend of mine who was diagnosed back in 2007. He sat me down and we talked for hours. I felt so much more relaxed when I left. He told me of some local restaurants that he frequents and that they handle gluten-free really well. I have not eaten outside of my home since the beginning of May. This weekend the wife and I went to a pizza joint and had a pizza and a couple cocktails. Happy to say, I didn’t die! Actually gives you a bit of confidence, which I have been lacking.

All my best to the two of you, and you should be proud for what you are doing. I can’t imagine what I put my wife through these past 4 months. But I can tell you, every day she would tell me something new about the disease, and it really helped me to know she was showing an interest and I wasn’t just a burden. Because that’s how most of us Celiac’s feel, I’m sure.

Doug

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i feel where he is coming from!  imagine food hurting :(  i still am a little bit anxious - which kills my appetite - when faced with eating.  and i am 6 years into the diet.  so, i have a xanax script for bad days.  the best appetite stimulant is still illegal in my state  <_<  not that i would suggest breaking the law ;)  notme!  lolz

his problem with dairy may clear up after he's been strictly gluten-free and healing.   the enzyme needed to digest dairy is produced on the ends of the villi and if he has a lot of gut damage still, he's not producing this enzyme.  once villi have healed, he may be able to handle dairy.  

in just the few years i've been dx'd, there are so many more tasty gluten-free products - tinkyada pasta is my go-to, but i just tried barilla gluten-free macaroni the other day (they just got it in to my grocery store) and it was really good.  also reheated very well.  ima try it in pasta salad soon and see how that goes :) 

do you guys live together?  when he was diagnosed, did y'all go through the kitchen and replace all opened (sugar that could've been double dipped with flour when baking, mayo & pb & jelly that might have been 'crumbed')  i had to do it in 'waves' it was hard to give stuff up.  kept my gluteny bread maker for 2 years lololz never used it again but i just couldn't let go!  it's hard.  thank you for being understanding.  i am lucky to have a very patient husband who loves me in spite of every time i've freaked at him out of frustration.  it kills spontaneity because 9 times out of 10 i gotta pack food (fix food, pack food, eat food, lather, rinse, repeat)  and if i want to kiss him he has to brush his teeth and i am loathe to remind him.  it's a pain.  

this forum pretty much has saved my sanity over the years.   doctors are less than helpful most of the time.  'you have celiac.  the only treatment is a gluten free diet.  have a nice day.  just order off the gluten free menu, no big deal.  have a nice day.  bye now.'  

when he starts feeling better, he'll be a happier guy.  i had many, many symptoms clear up that were seemingly unrelated.  turns out, celiac is systemic, meaning it messes you whole entire body's smooth operation with excess inflammation, etc, because basically your body attacks itself.  i feel like he is still getting gluten from somewhere.....  i turn into superb%$@# when i get glutened, lolz.  and then it knocks me down and the poor guy has to take care of me.  guys are so wierd he may be appreciative of your efforts and just feeling like being sick isn't 'manly' -  maybe keeping a food journal will help pinpoint the culprit.  

my husband actually found this website when i was in a bad place of frustration.  you're in a good place to ask questions :)  welcome to the forum

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I can totally understand your boyfriend's feelings of despair, and not having any answers, but he does have an answer. He should be thankful he was diagnosed correctly!! There r alot of people out there who r still being misdiagnosed which is very sad to say. You need to tell him that he needs to be thankful he is alive, and that it could be much worse. He needs to get on an exercise regimen, start slowly than progress to resistance training. He needs to get any traces of gluten out of your kitchen. Stock your pantry with high qualit gluten free products. Get online, and start researching gluten-free recipes. There r so many good gluten-free food products on the market. Talk to people in your area, look for support groups that discuss celiac issues hey will help your boyfriend see he is not alone. There r 2,000,000+ people out there living with celiac disease. He's not the only one. Talk to other people who r living with celiac disease, and succeeding, and living vibrant lives. There is a product that I use, actually 2 that have helped me tremendously. One is Body Ecology vitality super greens, very good for the digestive lining, and will help heal his small intestine. The other is to help supplement his diet called Naked Mass, it is a high protein powder that has great calories, very low sugar, so u can flavor as u like, and is soy, no go, and gluten free, and is produced in a dedicated gluten free facility in Coral Gables Florida.. It will take time to get through the psychological, and dietary changes, but this can be a blessing in disguise, and u need to support him, and show him the positive in this. Let him know it could be much worse he could be in a wheelchair... Hope this helps,

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7 hours ago, dharwood said:

It’s only been about 4 months since my diagnosis and it sounds a lot like your BF’s. I did not have the vomiting, but did have diarrhea, reflux, blood in stools, rashes and no appetite. My biggest hurdle was, and although it has gotten better in the past two weeks, still is, the depression/anxiety. Symptoms of Celiac can be depression and I got it bad. I have missed work, had no sense of self-worth and figured I was a huge burden to my family and myself – “so what’s the use” attitude. I am getting counseling now which is helping. I also have full body muscle aches. My Dr. says I have Fibromyalgia, which I may, but it all started when I went Gluten Free. I joined this Forum and have gotten more good info and a better understanding of how Celiac can affect everyone differently. It sounds like your BF is unfortunately getting a big dose of symptoms. When diagnosed I always expected to go gluten-free and be cured. After the first 2 weeks I was still feeling bad and got frustrated. I was eating like your BF. I finally seen a nutritionist and she explained some things that made sense to me. If they are true or not, I don’t know, but it clicked with me. I was a big wheat eater leading up to diagnoses. Most bread/cereal/baked goods/flour is enriched with stuff. When you cut it out cold turkey, your body can reject that. Not to mention your carb intake drops tremendously. She had me up my carb intake (I hate gluten-free bread, unless toasted) and try and keep it in sync with my protein intake. I had to track “everything”. There is a phone app that helps you with this. After about a month I could go back and see what I ate leading up to a bad day, and more importantly what I was eating that lead up to a good day.  

 

I would continue educating yourself and him on every aspect of the disease, and realize there are a lot of folks in the same boat. If possible talk to some of them, I recently reached out to an old Army friend of mine who was diagnosed back in 2007. He sat me down and we talked for hours. I felt so much more relaxed when I left. He told me of some local restaurants that he frequents and that they handle gluten-free really well. I have not eaten outside of my home since the beginning of May. This weekend the wife and I went to a pizza joint and had a pizza and a couple cocktails. Happy to say, I didn’t die! Actually gives you a bit of confidence, which I have been lacking.

 

All my best to the two of you, and you should be proud for what you are doing. I can’t imagine what I put my wife through these past 4 months. But I can tell you, every day she would tell me something new about the disease, and it really helped me to know she was showing an interest and I wasn’t just a burden. Because that’s how most of us Celiac’s feel, I’m sure.

 

Doug

Thanks for the response Doug. It's really eye opening to read a bunch of other peoples responses about their own personal lives, and it makes me feel better about what I'm trying to do. It also makes me feel less upset that he takes a lot out on me when he's upset, mainly because he's coping. 

He has yet to see a nutritionist, Which I have repetitively told him to do because they might be of some help. The one thing we actually do go out to get together is pizza, because there is a big gluten free pizzeria by the both of us- OR sushi, because it is pretty easy to go gluten free with sushi. 

Any advice on what to do when you have no appetite but know you need to eat? When he knows he doesn't have an appetite, he doesn't force himself too. He'll let himself go the entire day without eating if he gets the feeling. Im sure a nutritionist would help him with his carb/protein intake too, right?  Overall, thanks for the response. It really was informative and made me feel a lot better!

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3 hours ago, Kurt ashton said:

I can totally understand your boyfriend's feelings of despair, and not having any answers, but he does have an answer. He should be thankful he was diagnosed correctly!! There r alot of people out there who r still being misdiagnosed which is very sad to say. You need to tell him that he needs to be thankful he is alive, and that it could be much worse. He needs to get on an exercise regimen, start slowly than progress to resistance training. He needs to get any traces of gluten out of your kitchen. Stock your pantry with high qualit gluten free products. Get online, and start researching gluten-free recipes. There r so many good gluten-free food products on the market. Talk to people in your area, look for support groups that discuss celiac issues hey will help your boyfriend see he is not alone. There r 2,000,000+ people out there living with celiac disease. He's not the only one. Talk to other people who r living with celiac disease, and succeeding, and living vibrant lives. There is a product that I use, actually 2 that have helped me tremendously. One is Body Ecology vitality super greens, very good for the digestive lining, and will help heal his small intestine. The other is to help supplement his diet called Naked Mass, it is a high protein powder that has great calories, very low sugar, so u can flavor as u like, and is soy, no go, and gluten free, and is produced in a dedicated gluten free facility in Coral Gables Florida.. It will take time to get through the psychological, and dietary changes, but this can be a blessing in disguise, and u need to support him, and show him the positive in this. Let him know it could be much worse he could be in a wheelchair... Hope this helps,

Thanks for taking the time to respond to me, Kurt. I actually researched a few months ago protein that is gluten free and I did come across Naked and he did purchase it. He would drink it every morning before work until he ran out. I'm not sure why he never got around to buying it again but I will definitely make sure he does. I just checked out the Body Ecology as well. I will tell him about it! I know I have to support him- and I am! But, I just wish he would let me in more rather than push me away. I wish I knew how he was feeling and could make things better. But with time, hopefully they do.

 

Thanks!

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6 hours ago, notme! said:

i feel where he is coming from!  imagine food hurting :(  i still am a little bit anxious - which kills my appetite - when faced with eating.  and i am 6 years into the diet.  so, i have a xanax script for bad days.  the best appetite stimulant is still illegal in my state  <_<  not that i would suggest breaking the law ;)  notme!  lolz

his problem with dairy may clear up after he's been strictly gluten-free and healing.   the enzyme needed to digest dairy is produced on the ends of the villi and if he has a lot of gut damage still, he's not producing this enzyme.  once villi have healed, he may be able to handle dairy.  

in just the few years i've been dx'd, there are so many more tasty gluten-free products - tinkyada pasta is my go-to, but i just tried barilla gluten-free macaroni the other day (they just got it in to my grocery store) and it was really good.  also reheated very well.  ima try it in pasta salad soon and see how that goes :) 

do you guys live together?  when he was diagnosed, did y'all go through the kitchen and replace all opened (sugar that could've been double dipped with flour when baking, mayo & pb & jelly that might have been 'crumbed')  i had to do it in 'waves' it was hard to give stuff up.  kept my gluteny bread maker for 2 years lololz never used it again but i just couldn't let go!  it's hard.  thank you for being understanding.  i am lucky to have a very patient husband who loves me in spite of every time i've freaked at him out of frustration.  it kills spontaneity because 9 times out of 10 i gotta pack food (fix food, pack food, eat food, lather, rinse, repeat)  and if i want to kiss him he has to brush his teeth and i am loathe to remind him.  it's a pain.  

this forum pretty much has saved my sanity over the years.   doctors are less than helpful most of the time.  'you have celiac.  the only treatment is a gluten free diet.  have a nice day.  just order off the gluten free menu, no big deal.  have a nice day.  bye now.'  

when he starts feeling better, he'll be a happier guy.  i had many, many symptoms clear up that were seemingly unrelated.  turns out, celiac is systemic, meaning it messes you whole entire body's smooth operation with excess inflammation, etc, because basically your body attacks itself.  i feel like he is still getting gluten from somewhere.....  i turn into superb%$@# when i get glutened, lolz.  and then it knocks me down and the poor guy has to take care of me.  guys are so wierd he may be appreciative of your efforts and just feeling like being sick isn't 'manly' -  maybe keeping a food journal will help pinpoint the culprit.  

my husband actually found this website when i was in a bad place of frustration.  you're in a good place to ask questions :)  welcome to the forum

Notme, Thanks for your response. Yeah, if were thinking of the same appetite stimulant that isn't legal in your state, it isn't in ours either. He will occasionally use that to help him, but he keeps saying (which is understandable) that he needs another alternative because he is getting older and can't keep doing it. We don't live together, we've been dating for about a year now. He lives at home and has his own little pantry of gluten free snacks, breads, pastas, sauces, etc.

The first few months, he would see something that he thought wouldn't have gluten but it did, but he has gotten much better at reading labels and knowing what he can and can't have. We do cook a lot of gluten free meals, just because it makes him feel better knowing he can eat it. Theres also a gluten free bake shop by my house that I will go and pick up gluten-free baguettes, that are actually extremely tasty and we make garlic bread with it!

If we go out, I sometimes get nervous there might be cross contamination- but we stress to the people that he has a disease and we need to make sure its gluten-free. He wants to see another doctor too, about his anxiety when eating and maybe they could give him a light prescription for it. I feel terrible, I can never imagine having to feel like that. I try to eat gluten free with him whenever possible. 

he doctors were really not too helpful apparently, which is why I really want him to go to a nutritionist and maybe she/he can give him more advice as opposed to the other doctors who just say the same thing over and over.

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9 hours ago, cstark said:

When my mom and myself figured out it was mostly gluten that was making me go into "my" episodes, my mom decided it was time to go cold turkey for a few months to see how it goes.  Between November-mid-January, I cut out all sugars, diary, and caffeine, even chocolate which was hard.  I felt like a rabbit eating only veggies and meat during this time. :)  I started to slowly add in the diary and have found the delicate balance between enough dairy and too much dairy.  I still to this day have to be careful about the amount of dairy I ingest.  I no longer drink as much caffeine as this tends to make me more vulnerable to the episodes.  The diet I started on helped to kick start the healing process from being glutened for a long time.  I am now almost episode-free and found the triggers that make me go into an episode.  For me, the key was to listen what my body was telling me and being willing to stay away from those triggers as much as possible.  There are times my body goes haywire, but I usually can see what caused the episode.

It may help your BF to cut out anything processed or that has caffeine in it (as caffeine is a stimulant and may exacerbate his symptoms).  Would your BF be interested in going this route for a time to kick start his healing journey?

I think it's awesome to have such a support system by his side through this difficult time after the diagnosis.  As Newly Diagnosed stated in the post, a listening ear can go a long way.  There were times and still are, that sometimes all I would need was a listening ear letting me vent some of the frustrations of the day especially if it was a bad day.  As I started to see the symptoms reduce, I started to look forward to the good days more and more.  When those good days came around, I snatched them up and was thankful for the clear head and no fuzziness.  

Those days for your BF will come as well, and sometimes patience runs thin, but hang in there.  His body is adjusting and is not too thrilled about it right now.  Wish you all the best. 

Thanks for your response! It means a lot you took the time out to respond. I am going to have to mention to him about possibly cutting dairy from his diet for a few months because maybe that is what is still having a negative effect in his body. 

He isn't big on caffeine, but he does drink soda...

 

The only symptoms for him that are reduced is vomitting. He is still losing weight and a huge loss of appetite. Do you do anything specific for loss of appetite?

 

Thanks so much for your advice!

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He may want to think about cutting out the soda for a while as well because the high fructose corn syrup does a real number on the body.  High fructose corn syrup is highly toxic and destroys the body's systems.  Feel free to research on it.  It's nasty stuff.

As to the loss of appetite, sometimes food does not sound appealing to me.  A lot times it's because some the gluten free is bland and sometimes tasteless.  I remember those first few months I was on the meat/veggie kick.  This is when I decided to go through my seasonings to make my own rub for the meats for the savory tastes.  If he likes asparagus, it's really good roasted in the oven with olive oil and Italian seasoning.  Oh, I did make sure my season rub is gluten free as I checked the labels.  See what is on your spice rack and go for it.  I usually make it with a rubbed sage, sea salt, and pepper base.  Try those three out a couple of times and then get creative with the seasonings.  My mom thoughts I was a little nuts combining all those seasonings together, but now I have her and my brother hooked on the rub.  :)

Hope this helps. 

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I agree.  Plus soda for me is an appetite suppressant.  It fills you up and then you don't feel hungry.  It also helps the appetite to have foods that you can look forward to eating.  At first I thought I would never find anything I liked again, but trial and error and going back to basics that I have always enjoyed really helped.  Also, for me depression also can play a role.  I try to think positively about how glad I am to have a diagnosis and focus on all the really good foods that I can still eat, but when I go grocery shopping or when I am at work and someone brings in a cake, or when I get invited somewhere that will involve food, I get anxious and stressed and sad/depressed about things I can no longer do or have.  You are doing a great job and your boyfriend is lucky to have someone so understanding.

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i am wary of eating sushi out b/c most soy sauce is made of wheat.  i roll my own at home (helps that daughter was a sushi chef :)  )  and i use bragg's amino sub for soy sauce.

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1 minute ago, notme! said:

i am wary of eating sushi out b/c most soy sauce is made of wheat.  i roll my own at home (helps that daughter was a sushi chef :)  )  and i use bragg's amino sub for soy sauce.

We usually do take out from a local place that knows him very well and they have gluten free options available, which is nice. Even gluten-free soy sauce...but we usually ask for everything plain and use La Choy soy sauce b/c it is certified gluten-free.....Send your daughter this way for some homemade sushi!!!! I'll pay!! haha.

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2 minutes ago, glutenfreegirlfriend said:

Send your daughter this way for some homemade sushi!!!! I'll pay!! haha.

she is fun to watch !! :)  she taught me a few tricks.  the prep takes longer than the actual rolling.  speaking of rolling - tell him you're never too old ;)  i'm a grandma lolz

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It is very sweet that you are reaching out about his illness, and that you are really trying to help. Although he may not express it, this probably means a lot to him. The first few months after getting diagnosed with celiac disease are super challenging. It takes time to mourn and get used to a new reality that is forced upon you. You feel like your body has betrayed you. I would still continue to check in but give him space to work it out. Time is a great healer. 

With that said, I think there might be some other issues he is confronting. I had celiac disease and continued (and still continue) to suffer with various related issues - low stomach acid (I couldn't digest meat and unintentionally lost a lot of weight!) and vitamin problems. Has he had his blood checked? Things really turned around for me when I started seeing an alternative medicine doctor, a naturopath, who was able to set me with excellent healing products and food suggestions. This might be something to consider. You'll pay out of pocket but it was SO worth it for me! 

Best of luck! He will heal. :)

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On 9/6/2016 at 9:25 AM, glutenfreegirlfriend said:

Ladies, Gentleman, my fellow Celiacs, 

I need your help, please!! As of December 2015, my boyfriend got diagnosed with Celiacs disease and has not been able to cope and adjust to it. He tries- very hard- but for whatever reason his body still is not agreeing with him. He has no idea I made this account, but I need to try and research things that will help. It is really having an affect on his life, he is not himself anymore and it is definitely starting to take a toll on our relationship as well. 

As his girlfriend, I have tried a lot to help...even though there is not too much I can do. Instead of eating out, 95% of the time we cook together. I make sure everything I get him is gluten-free and I will randomly bake and cook him things, just so I know he has things to eat. My main concern, as well as his, is that his appetite is completely gone. He will wake up in the morning and can barely get himself to eat anything once 1 or 2 pm rolls around. He'll eat once a day, if that. He dropped about 20 pounds, too. He has tried probiotics, the only thing that it really helped was the vomitting...which still happens occasionally, just not as much. He also doesn't really like talking about the matter, especially with me. Whenever he brings it up and I try helping I get a lot of backlash. I know its hard to adjust too, but I am just trying to help.

 

What do you guys recommend? Going back to the doctors? Is there anything or any supplement any of you take that helps with your appetite? I need help!

 

Thanks,

A concerned girlfriend.

glutenfreegirlfriend,

I hope you are still following this thread.

The vomiting bile and unintended weight loss can be a sign of bile reflux.

Here is a NYtimes article on it.

http://www.nytimes.com/2009/06/30/health/30brod.html

here is thread about it.

Getting completely over bile reflux can be difficult.  I hope he finds something that works for him.

***this is not medical advice.

good luck on your continued journey.

posterboy,

 

 

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That sounds alot like me.  I found that vitamin supplements helped me alot, particularly Vitamins D and B12.  Get tested to see if you need supplements.  I took over the counter supplements, which I found were not being absorbed properly, less than 50%, and the vitamins not being absorbed were going into my liver.  

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