Newbie to the site... Help!

[GFforever]

Hello everyone!

My mom recommended this site and I already feel comforted and not insane anymore reading what you guys have said about your experiences... so let me introduce you to my hell.

So I was diagnosed with a gluten allergy in 7th grade and completely ignored it... not even knowing what gluten was. For example, one year my friends got me a huge box with 48 packs of pop tarts inside and I ate every single one in about a month. Let's just say I'm a pig. I always took pride in myself for being able to eat like a monster and still be skinny and an amazing athlete. I was an excellent swimmer and always went to States and Nationals with my school team, mind you while not being on year round teams at all.

I think it was 2 years ago, yes, April 22, 2016, the doctor told my mom and I and that I have Crohn's disease and that I need to go on drugs immediately. Of course I was in denial for the next 6 months and still am to some degree and kept eating gluten in sadness, fear and denial. I went on Imuran for about 3 1/2 months but of course, the lovely teen that I am I didn't take many of the pills. My mom and I "doctor shopped" a lot because she has always been into the natural route and I love and trust her fully so I listened to her. I had a colonoscopy done and didn't eat much of anything. I remember there was a period of maybe a month where all I could keep in was white rice with butter. It felt like candy I'm not kidding. Anyways, we bounced around from 4 different doctors till we finally found an integrative medicine doctor who was willing to help and was certain he could heal me. I was finally ready to accept Crohn's and do what I could to heal myself naturally. I'd seen too many documentaries on our current food (What the Health and Supersize Me for example) and read too much online about the effects of long term high class drugs--the biologics like Humira etc. and was scared that my little body would't be able to handle it so why not try the natural route.

So my current doctor did blood work and collected stool--as most do, and it came back that I was severely allergic to 60 out of the main 61 types of gluten or whatever the number is...I was a rare case for him and very severe. I also presented allergies to rice, eggs, most meats--I can eat cooked chicken and pork , allergic to most vegetables and most fruits, and seafood--I can have raw and cooked salmon, cooked sea bass, trout and raw tuna. So now I am left with not many options and a million supplements to take. So I have some questions for anyone willing to help me...

1) Does anyone else have severe food allergies like me and can you make any suggestions for recipes? I take SeaCure--a fish protein supplement in between meals but I need some protein to eat! I love to eat and have already lost yet another pound because I am just not getting enough nutrients even though they are gluten free and safe foods.

2) How long till my hair will get thick and beautiful again?? I read that Imran affects hair and makes you lose it and thin it out...how long will it take to heal that??

3) My skin, especially my hands crack really badly and the lines are white with rawness and dryness. Help me! I use Palmer's Coconut Oil Formula which is gluten-free and because I can have coconuts. Anyone have any other good recommendations for gluten-free lotions? My hands are painful!

4) Has anyone been so severe like me where you haven't been pregnant but have hemorrhoids on the outside of your butt?? Super weird and uncomfortable...Have they ever gone back in? Also, what should I do to relieve the burning sensation they give me? Or that area in general?

5) I am only 19 but long to have a family one day and lots of children. If I healed myself by the time I was let's say 26, do you think I could have kids?? 

6) Speaking of kids, I haven't had my period in over two years. When should I expect that to come back?

7) Does anyone else crack their hands, neck, fingers, back, knees, or toes? I do and I'm wondering if that could be related to joint/skeletal discomfort..

8) When will my irritability go away? I used to be the happiest person on earth and never cursed but now it seems like it's all I do. I hate feeling this way!!

9) Do you have any recommendations like meal prepping or anything to help me? I am in college and have no time to do anything already...Have any fast and easy meals to make that will last the weekdays?

10) I have talked your ears off so I am so thankful if any of you read this far. I appreciate any advice and am so thankful for this website!!

I attached my the list of foods that I can and cannot eat if any of you can make recipe suggestions off of the green and yellow foods. Yellows can be tried once a week or every few days if I can tolerate them. Otherwise they go on the red list--which are no-no foods.

Thank you so much!!

List of Food.docx

[kareng]

8 hours ago, GFforever said:

Hello everyone!

My mom recommended this site and I already feel comforted and not insane anymore reading what you guys have said about your experiences... so let me introduce you to my hell.

So I was diagnosed with a gluten allergy in 7th grade and completely ignored it... not even knowing what gluten was. For example, one year my friends got me a huge box with 48 packs of pop tarts inside and I ate every single one in about a month. Let's just say I'm a pig. I always took pride in myself for being able to eat like a monster and still be skinny and an amazing athlete. I was an excellent swimmer and always went to States and Nationals with my school team, mind you while not being on year round teams at all.

I think it was 2 years ago, yes, April 22, 2016, the doctor told my mom and I and that I have Crohn's disease and that I need to go on drugs immediately. Of course I was in denial for the next 6 months and still am to some degree and kept eating gluten in sadness, fear and denial. I went on Imuran for about 3 1/2 months but of course, the lovely teen that I am I didn't take many of the pills. My mom and I "doctor shopped" a lot because she has always been into the natural route and I love and trust her fully so I listened to her. I had a colonoscopy done and didn't eat much of anything. I remember there was a period of maybe a month where all I could keep in was white rice with butter. It felt like candy I'm not kidding. Anyways, we bounced around from 4 different doctors till we finally found an integrative medicine doctor who was willing to help and was certain he could heal me. I was finally ready to accept Crohn's and do what I could to heal myself naturally. I'd seen too many documentaries on our current food (What the Health and Supersize Me for example) and read too much online about the effects of long term high class drugs--the biologics like Humira etc. and was scared that my little body would't be able to handle it so why not try the natural route.

So my current doctor did blood work and collected stool--as most do, and it came back that I was severely allergic to 60 out of the main 61 types of gluten or whatever the number is...I was a rare case for him and very severe. I also presented allergies to rice, eggs, most meats--I can eat cooked chicken and pork , allergic to most vegetables and most fruits, and seafood--I can have raw and cooked salmon, cooked sea bass, trout and raw tuna. So now I am left with not many options and a million supplements to take. So I have some questions for anyone willing to help me...

1) Does anyone else have severe food allergies like me and can you make any suggestions for recipes? I take SeaCure--a fish protein supplement in between meals but I need some protein to eat! I love to eat and have already lost yet another pound because I am just not getting enough nutrients even though they are gluten free and safe foods.

2) How long till my hair will get thick and beautiful again?? I read that Imran affects hair and makes you lose it and thin it out...how long will it take to heal that??

3) My skin, especially my hands crack really badly and the lines are white with rawness and dryness. Help me! I use Palmer's Coconut Oil Formula which is gluten-free and because I can have coconuts. Anyone have any other good recommendations for gluten-free lotions? My hands are painful!

4) Has anyone been so severe like me where you haven't been pregnant but have hemorrhoids on the outside of your butt?? Super weird and uncomfortable...Have they ever gone back in? Also, what should I do to relieve the burning sensation they give me? Or that area in general?

5) I am only 19 but long to have a family one day and lots of children. If I healed myself by the time I was let's say 26, do you think I could have kids?? 

6) Speaking of kids, I haven't had my period in over two years. When should I expect that to come back?

7) Does anyone else crack their hands, neck, fingers, back, knees, or toes? I do and I'm wondering if that could be related to joint/skeletal discomfort..

8) When will my irritability go away? I used to be the happiest person on earth and never cursed but now it seems like it's all I do. I hate feeling this way!!

9) Do you have any recommendations like meal prepping or anything to help me? I am in college and have no time to do anything already...Have any fast and easy meals to make that will last the weekdays?

10) I have talked your ears off so I am so thankful if any of you read this far. I appreciate any advice and am so thankful for this website!!

I attached my the list of foods that I can and cannot eat if any of you can make recipe suggestions off of the green and yellow foods. Yellows can be tried once a week or every few days if I can tolerate them. Otherwise they go on the red list--which are no-no foods.

Thank you so much!!

List of Food.docx

Wow!  There is so much I want to say to your mother.....  but you are an adult now so it's your choice to take care of yourself.  Please see a medical doctor and treat the Crohns!  It is a very serious medical disease that can kill you!  Gluten allergy isn't really a thing.  You can have an allergy to wheat or you can have Celiac.  But I think your most pressing and life threatening issue is the Crohn's.  You might want to find a therapist that specializes in people with chronic illness to help you with your denial and  to help you make some good decisions about health.  

[Ennis-TX]

8 hours ago, GFforever said:

Hello everyone!

My mom recommended this site and I already feel comforted and not insane anymore reading what you guys have said about your experiences... so let me introduce you to my hell.

So I was diagnosed with a gluten allergy in 7th grade and completely ignored it... not even knowing what gluten was. For example, one year my friends got me a huge box with 48 packs of pop tarts inside and I ate every single one in about a month. Let's just say I'm a pig. I always took pride in myself for being able to eat like a monster and still be skinny and an amazing athlete. I was an excellent swimmer and always went to States and Nationals with my school team, mind you while not being on year round teams at all.

I think it was 2 years ago, yes, April 22, 2016, the doctor told my mom and I and that I have Crohn's disease and that I need to go on drugs immediately. Of course I was in denial for the next 6 months and still am to some degree and kept eating gluten in sadness, fear and denial. I went on Imuran for about 3 1/2 months but of course, the lovely teen that I am I didn't take many of the pills. My mom and I "doctor shopped" a lot because she has always been into the natural route and I love and trust her fully so I listened to her. I had a colonoscopy done and didn't eat much of anything. I remember there was a period of maybe a month where all I could keep in was white rice with butter. It felt like candy I'm not kidding. Anyways, we bounced around from 4 different doctors till we finally found an integrative medicine doctor who was willing to help and was certain he could heal me. I was finally ready to accept Crohn's and do what I could to heal myself naturally. I'd seen too many documentaries on our current food (What the Health and Supersize Me for example) and read too much online about the effects of long term high class drugs--the biologics like Humira etc. and was scared that my little body would't be able to handle it so why not try the natural route.

So my current doctor did blood work and collected stool--as most do, and it came back that I was severely allergic to 60 out of the main 61 types of gluten or whatever the number is...I was a rare case for him and very severe. I also presented allergies to rice, eggs, most meats--I can eat cooked chicken and pork , allergic to most vegetables and most fruits, and seafood--I can have raw and cooked salmon, cooked sea bass, trout and raw tuna. So now I am left with not many options and a million supplements to take. So I have some questions for anyone willing to help me...

1) Does anyone else have severe food allergies like me and can you make any suggestions for recipes? I take SeaCure--a fish protein supplement in between meals but I need some protein to eat! I love to eat and have already lost yet another pound because I am just not getting enough nutrients even though they are gluten free and safe foods.

2) How long till my hair will get thick and beautiful again?? I read that Imran affects hair and makes you lose it and thin it out...how long will it take to heal that??

3) My skin, especially my hands crack really badly and the lines are white with rawness and dryness. Help me! I use Palmer's Coconut Oil Formula which is gluten-free and because I can have coconuts. Anyone have any other good recommendations for gluten-free lotions? My hands are painful!

4) Has anyone been so severe like me where you haven't been pregnant but have hemorrhoids on the outside of your butt?? Super weird and uncomfortable...Have they ever gone back in? Also, what should I do to relieve the burning sensation they give me? Or that area in general?

5) I am only 19 but long to have a family one day and lots of children. If I healed myself by the time I was let's say 26, do you think I could have kids?? 

6) Speaking of kids, I haven't had my period in over two years. When should I expect that to come back?

7) Does anyone else crack their hands, neck, fingers, back, knees, or toes? I do and I'm wondering if that could be related to joint/skeletal discomfort..

8) When will my irritability go away? I used to be the happiest person on earth and never cursed but now it seems like it's all I do. I hate feeling this way!!

9) Do you have any recommendations like meal prepping or anything to help me? I am in college and have no time to do anything already...Have any fast and easy meals to make that will last the weekdays?

10) I have talked your ears off so I am so thankful if any of you read this far. I appreciate any advice and am so thankful for this website!!

I attached my the list of foods that I can and cannot eat if any of you can make recipe suggestions off of the green and yellow foods. Yellows can be tried once a week or every few days if I can tolerate them. Otherwise they go on the red list--which are no-no foods.

Thank you so much!!

List of Food.docx

I myself have many food allergies and intolerance issues. Some resolved on the gluten free diet for treating celiac, after a few years as the celiac caused my immune system to freak on somethings it seems. You can check my profile for my list....BTW your doc does not load. Anyway I also have some odd allergies like corn, whey, and violent vomiting reactions to things like peanuts in even trace amounts found I can tolerate something in trace amounts. I can not eat more then a few pinches of most meats as I seem to lack the enzymes to break them down, fish being hte only safe meat and egg whites (yolks are very iffy). I developed Ulcerative Colitis and mine flares to the sugars fructose and glucose for hte most part with carbs and starches seeming to also effect it.
My diet regime has turned to Paleo/Keto where I do not eat grains, dairy and avoid carbs like fruits, root plants, starchy veggies etc. I live on nut based baked goods, nut butters, smoothies, stir fries, omelettes, soups, stews, sometimes I treat myself to baked or grilled fish with some extra pancreatic enzymes to help me break it down. And thanks to the enzymes I can have stuff like turkey in small amounts but notice it causes a odd side effect that my nutritionist says is a sign I do not tolerate it. I do have to go on vegan protein powder smoothies for evening meals and sip on one throughout the day to keep on weight.

As to your hair, I know you said you had meat issue about how is pure collagen? I take a collagen supplement powder in the morning to help with my hair and skin and eat plenty of fats from nut butters and avocados.

Week day meals, look at meal prepping like soups, stews, crock pot meals, a large batch of chicken either grilled, baked, or slow cooker done, over steamed veggies in meal prep containers and seasoning each differently to mix it up. I love nut meal porridge most days for easy meals.

PS if you have a autoimmune disease that is flaring those blood allergy test can really be thrown out of wack with false positives, focus on dealing with your AI disease and keeping a food diary. Change up your diet, try a food for a bit a day then remove it for several more and try again recording any changes. This way you can find foods you can tolerate and ones that give you issues.

[cyclinglady]

I know that you posted in the teens section, but Karen is right.  Crohn’s needs to be managed under a GI’s care.  He would treat those hemmoroids, for example.  You can manage Crohn’s with a combination of drugs, surgery, and diet, but it never going away.  You can still live a good life and do all the things you want though.  

 Sure you can eat a much healthier diet.  Working with a functional doctor in addition with a traditional gastroenterologist is a good idea as long as they are both willing to work together, but the GI has all the tools to see if you are in remission or in a flare. 

Celiac disease is different.  It can be managed with diet.  It is the only Autoimmune Disorder/Issue  (and there are more than 80 known) that can be managed with diet.  But a good diet can help with other AI issues too.   Get your records and find out exactly what is wrong with you.  Know that those good allergy tests are not that accurate (maybe 50%).  It does not matter how many vitamins and supplements you take, if your gut is not absorbing them due to celiac or Crohn’s damage, then they are pretty much useless.  (Like your hair being damaged).  

Are you saying that you were diagnosed years ago with celiac disease or did that come from an allergy test?

If you are in college, then you should be be researching all of this so that you can make informed decisions.  This forum, though helpful and we would love to have you here, is not your first stop.  Get on to a Crohn’s forum at the very least, but rely on a doctor for your medical care.  Forums are good for things like: 1) testing for the disease, 2) is this gluten free?, 3) how do you cook this safely or 4) I need to vent! 

My friend has had Crohn’s for thirty years.  She is doing well.  My niece has been diagnosed for three years.  She is 21 and is under a GI’s care.  When she was diagnosed (using a pill camera), she rarely had any abominal pain.   She just had a few episodes a year, yet that pill camera revealed severe damage.  Now they are trying to prevent cutting out some of her intestines.  Do I like that she needs drugs?  No, but she has had more options, unlike my friend who has had multiple surgeries because the newer treatments were not invented yet.  

Work with a dietician.  

I am not telling you to not study for that English Lit class, but Crohn’s has a higher priority.  You better get in A in managing it.  

I wish you well.  

[GFinDC]

Hi,

The foods we need to avoid as celiacs are wheat, rye, barley, and oats (possibly).  Only a small percentage of celiacs react to oats.  But oats are often cross contaminated so that's a good reason to avoid them for a few months anyway.   You should also avoid dairy for a few months.

[GFforever]

On January 26, 2018 at 7:48 AM, kareng said:

Wow!  There is so much I want to say to your mother.....  but you are an adult now so it's your choice to take care of yourself.  Please see a medical doctor and treat the Crohns!  It is a very serious medical disease that can kill you!  Gluten allergy isn't really a thing.  You can have an allergy to wheat or you can have Celiac.  But I think your most pressing and life threatening issue is the Crohn's.  You might want to find a therapist that specializes in people with chronic illness to help you with your denial and  to help you make some good decisions about health.  

What would you say to her?? Just wondering...

[kareng]

41 minutes ago, GFforever said:

What would you say to her?? Just wondering...

There is no point now.  You are an adult, you are now in charge of your health.  If you choose to ignore medical advice, that's on you now.  

[GFforever]

1 minute ago, kareng said:

There is no point now.  You are an adult, you are now in charge of your health.  If you choose to ignore medical advice, that's on you now.  

Oh I see. I actually checked with my doctor and I have Celiac's not Crohn's so I don't need medication. Unless I have cancer or something I don't plan on ever taking medicine ever again. 

[Juca]

The reason why you seem to have so many allergies might be leaky gut. If your intestinal permeability is compromised, all sorts of stuff gets in your system and your immune system basically reacts to everything that passes through. Many reactions should subside as soon as you can heal your leaky gut. 

I had very dry skin too. That went away as soon as my body was able to start absorbing the fat and other nutrients in my diet. Before I would just poop it all out. It seems one has to "eat" one's moisturizer, not apply it topically. 

[ch88]

It is important that you avoid even trace amounts of gluten if you are celiac. Otherwise it could destroy your gut.