Continuing Symptoms

[Tangerine]

Hello everyone,

I'm new to the boards and to celiac disease. I'm only 20 and I was diagnosed in early May with just a blood test after 6 months of feeling like crap. I had been losing weight, feeling tired, cranky, and felt like I had a 24 hour, 7 days a week side ache on my left side.

Well, I went gluten free and was feeling a lot better until mid July and then I started to have symptoms again. I reevaluated my diet and took out anything that was questionable at all-- like rosated nuts and such. Well I'm still feeling crummy, I just realized I'm losing weight again!!! I wasn't for about 3-4 months, and now I am. I know that I shouldn't be because I know how much I should eat every day and stuff ( I have been battleing an eating disorder for the past 3 years, yet have been in recovery for the past year... so I DO know how much I need to eat to gain/ maintain my weight.) I have also been having less sever(sp) side aches/cramps, however I can't eat that much at all before feeling totally full. I'm a little nervous about these new symptoms... and why they arn't going away, especailly the new weight loss!!!

Any advice or help would be greatly appreciated!

[KaitiUSA]

If you were doing good for a while and then it started again the first thing that comes to my mind is have you been 100% gluten free?

Have all products like soaps, shampoos, makeups, lotions, and things like that been checked? There could be a little bit sneaking in.

How long have you been gluten free? For some people it takes longer for symptoms to go away. Took me about 8 months to get back to normal but I was feeling alot better after the 3rd month. It varies person to person though.

[Tangerine]

I think I have taken everything out that could be questionable with gluten... I really don't understand shampoos and lotions though... does it matter if it is applied to your skin? I can understand chapsticks, and lipstick and such, but shampoo? I'm not discrediting you, I just want to undrstand the why behind it.

Do you know any brands for gluten free chapsticks and shampoos ect...

[mandigirl1]

hello tangerine!

this is mandigirl1.

Im 32 and was diagnosed celiac disease 6 years ago.

Up until my diagnosis, I used to eat everything and then run to the bathroom 5 minutes later. I was soooo thin. I never gained weight! I liked being thin, but there was a trade-off: besides having stomach pain all the time, I had a bloated belly. I used to look pregnant and I remember trying on bathing suits and crying over my shape.....if only I didnt have this stomach!!!!!! Then there was the gas problem!!!!! Having to go on dates and be petrified that Id have gas!!! I used to think, how embarrassing!!!!!!! I usually didnt eat much and I took many anti-gas pills before the date. IT WASNT EASY!!!! I USED TO CRY OVER THIS FEAR/REALITY!!!

After being diagnosed, I followed the strict diet, but was emotionally a wreck. I used to make everyone around me feel bad for eating their "normal" food while I had to be different and salivate....Let me tell you, it wasnt easy--it was the biggest challenge I ever faced. Eventually I started feeling better. BUT, to make up for the fact that I was now "deprived" all of the foods I loved, I started eating ALOT of the things that were "unforbidden". I used to eat an entire bag of nuts, tons of chocolate, rice pudding, peanut butter.......

I still had my old mentality that I could binge on any food and never gain weight!!!! I was in for a rude awakening. I stared gaining weight because now I was on the gluten-free diet. I gained 10-15 lbs and was beside myself. So then I stared working out to lose weight. I would binge on 3000 calories of junk, then frantically run to the gym.

Needless to say, as time went on, I felt better and I stared eating normally. However, little did I know that I was developing an eating disorder. I became OBSSESSED with food---what I could have/not have, indulging in the junk food, looking in the mirror, getting on the scale everyday, working out til I was near faint.

Today, Im much better. I follow a relatively healthy diet, excersise less.....One thing that has remained is my obsessive thinking and behavior over my weight, my health, looking good, not getting glutened. There isnt a day that goes by where at least one of those things (or all) arent in my mind. But I know how to deal with it. Everyone needs coping skills, otherwise we wouldnt be able to get through anything!!!!!

Phew,

Sorry this is sooooo long but I saw your post and was affected by it. I saw the words "eating disorder" and felt compelled to write to you. I wanted to explain my Celiac Story in a way that shows you a "real life" experience. To let you know that you are not ALONE. There support!

It gets a little easier to deal with Celiac as time goes on, with patience, good support from fam/friends, AND enjoying the gluten-free foods that are now available. So much more than I had even 6 years ago. There are tons of websites for food, as well as stores to buy gluten-free. Its becoming more common------even mainstreaam supermarkets carry some gluten-free food.

(Theres gluten-free pizza thats amazing by Foods By George. This is my new food "addiction" I've been having one everyday. My boyfriend ordered two 12 pc cartons-----I had to refridgerate 24 pizzas in a tiny freezer, in a tiny apt in NYC!!!)

You'll see, if you stick to this Celiac Support Forum, you can read and learn where to shop, what products are good, overall health issues, etc. Just invest in the time and check it out.

I learned so much here and most people on here were nice, friendly supportive, .....

You can also email me if you have any questions/problems about celiac disease. Ill try to help you as best as I can!!!!

Good Luck and Feel Well (Hang in there!!!!!!!

Hello everyone,

I'm new to the boards and to celiac disease. I'm only 20 and I was diagnosed in early May with just a blood test after 6 months of feeling like crap. I had been losing weight, feeling tired, cranky, and felt like I had a 24 hour, 7 days a week side ache on my left side.

Well, I went gluten free and was feeling a lot better until mid July and then I started to have symptoms again. I reevaluated my diet and took out anything that was questionable at all-- like rosated nuts and such. Well I'm still feeling crummy, I just realized I'm losing weight again!!! I wasn't for about 3-4 months, and now I am. I know that I shouldn't be because I know how much I should eat every day and stuff ( I have been battleing an eating disorder for the past 3 years, yet have been in recovery for the past year... so I DO know how much I need to eat to gain/ maintain my weight.) I have also been having less sever(sp) side aches/cramps, however I can't eat that much at all before feeling totally full. I'm a little nervous about these new symptoms... and why they arn't going away, especailly the new weight loss!!!  

Any advice or help would be greatly appreciated!

<{POST_SNAPBACK}>

[Mahee34]

I understand the frustration about going from being very thin to gaining some of the weight back and having that flucuating. Although being thin is nice, it isn't always healthy in the way the weight comes off. The best thing you can do is be patient...if you're still having food problems see a nutritionist, I had an easier transition because my mother is one, but she had to do a lot of research in order to help me out. But don't think that the entire issue is solved. celiac disease is a life changing disease and it takes time....there are some days that my stomach hurts so badly that I contemplate the whole not eating thing too, but it isn't the way....just remember, you aren't alone, we all are going through the same thing!

[janicefromcanada]

Hello everyone,

I'm new to the boards and to celiac disease. I'm only 20 and I was diagnosed in early May with just a blood test after 6 months of feeling like crap. I had been losing weight, feeling tired, cranky, and felt like I had a 24 hour, 7 days a week side ache on my left side.

Well, I went gluten free and was feeling a lot better until mid July and then I started to have symptoms again. I reevaluated my diet and took out anything that was questionable at all-- like rosated nuts and such. Well I'm still feeling crummy, I just realized I'm losing weight again!!! I wasn't for about 3-4 months, and now I am. I know that I shouldn't be because I know how much I should eat every day and stuff ( I have been battleing an eating disorder for the past 3 years, yet have been in recovery for the past year... so I DO know how much I need to eat to gain/ maintain my weight.) I have also been having less sever(sp) side aches/cramps, however I can't eat that much at all before feeling totally full. I'm a little nervous about these new symptoms... and why they arn't going away, especailly the new weight loss!!! 

Any advice or help would be greatly appreciated!

<{POST_SNAPBACK}>

[janicefromcanada]

Hello everyone,

I'm new to the boards and to celiac disease. I'm only 20 and I was diagnosed in early May with just a blood test after 6 months of feeling like crap. I had been losing weight, feeling tired, cranky, and felt like I had a 24 hour, 7 days a week side ache on my left side.

Well, I went gluten free and was feeling a lot better until mid July and then I started to have symptoms again. I reevaluated my diet and took out anything that was questionable at all-- like rosated nuts and such. Well I'm still feeling crummy, I just realized I'm losing weight again!!! I wasn't for about 3-4 months, and now I am. I know that I shouldn't be because I know how much I should eat every day and stuff ( I have been battleing an eating disorder for the past 3 years, yet have been in recovery for the past year... so I DO know how much I need to eat to gain/ maintain my weight.) I have also been having less sever(sp) side aches/cramps, however I can't eat that much at all before feeling totally full. I'm a little nervous about these new symptoms... and why they arn't going away, especailly the new weight loss!!! 

Any advice or help would be greatly appreciated!

<{POST_SNAPBACK}>

Hi,

  I'm fairly new at this game, being diagnosed last dec.for celiac,  but I have been dairy free for18 yrs. as my son was diagnosed with a dairy allergy. We all went on a dairy free diet and I felt so much better (along with less pain on my left side also) If you went on a completely dairy free diet along with gluten-free diet (I know it's tough but worth it) for at least two weeks to see if it helps, it might solve that problem. My gastro doc told me that problems with dairy can be a symptom of celiac disease.

[burdee]

Hi Tangerine:

I can sooooo relate to the ED obsessive thoughts about food, eating and my body. I was misdiagnosed with IBS for about 10 years, but have had celiac disease symptoms since I was about 6 years old with a bloated tummy but thin arms and legs. My mom took me to the doctor to get a weight loss diet because she thought I was getting 'FAT'! I wish that doc would have tested me for celiac disease over 50 years ago. Instead my mom restricted treats and put me on skim milk while my brother and dad teased me about being 'fat'. You can imagine what that did to my self image and ideas about good/bad food (which didn't even consider food intolerances) or what would make me 'fat'.

I struggled with eating disorder symptoms because my bloated tummy always made me feel 'fat'. I avoided eating until I was starving to avoid the bloating. I dieted and then binged. When I binged on gluten I felt so awful I often threw up. So I thought I was anorexic/bulimic and just plain weird. I went ED therapy (individual and group) and read almost everything written about EDs to try to 'recover'. I believed my ED habits CAUSED my (undiagnosed) celiac disease symptoms, but eventually learned it was the other way around.

When my "IBS" symptoms became constant excruciating pain, I finally read an article about celiac disease which described my symptoms (more constipation than diarrhea plus bloating, cramps and gas), I understood how celiac disease symptoms influenced my food/eating/body obsessions. Rather than feel deprived, as I had on so many 'diets', I decided to focus on substituting gluten free foods and later dairy and soy free foods when I tested postive also for those antibodies.

However, before I learned I had celiac disease I had created an online support group and website for women committed to recovery from ED habits. MANY of them had celiac disease symptoms and/or later learned they had celiac disease. Many with anorexic eating fears actually had celiac disease. Some with bulimic habits used purging to stop the digestive process and avoid pain. Now I wonder how many with ED habits really do have undiagnosed celiac disease. Hmmmm .... maybe I should do a poll here. I already did a poll on my ED recovery site, and many had celiac disease symptoms but believed their ED habits caused those symptoms. Anyway, I'm glad you discovered the source of your symptoms and found this website.

BURDEE

[mandigirl1]

I'd love to know where I could get support for my ED (or more specifically Excercise Binge Disorder) online? I would put myself in a food "coma" from 1000s of calories in bad/fattening food (chocolate mostly) then run to the gym for 3 hours to "purge" the calories I consumed. I havent been doing that lately, but, the obssessive thoughts/behavior is 24/7. I already take prozac and wellbutrin (have been ever since DX with celiac disease).

Any suggestions????

Thanx!!!!

[burdee]

Hi Mandi:

My online support group for women who are committed to recovery from 'disordered eating' habits is at Open Original Shared Link I also tried an antidepressant (Serzone) to help with my binge/purge habit/obsession. However, after an initial period I didn't feel any guilt and continue to b/p w/o remorse or concern. I realized I needed to change my beliefs before I could change those long practiced habits. I had to confront (admit to myself or write down) and challenge (ask if they were true) many of my food, eating and body beliefs before I could change my habits which were based on those irrational beliefs. The antidepressant numbed my emotions, but didn't change the basic beliefs which influenced my behaviors. When I believed certain foods would make me fat, I abstained from them and would crave them until I gave in and binged. When I realized, not what but when (only when hungry) and how much I ate, influenced weight gain, I stopped dieting and bingeing.

Fortunately I later learned I had celiac and had been celiac all my life (which gave me the bloated tummy which my family convinced me was 'fat'). Knowing I had celiac disease freed me from a LOT of those 'fat' fears. Most of my b/p recovery occurred BEFORE I learned I had celiac disease. However, I avoided the diet/binge mentality when I abstained from gluten by thinking 'substitute' not deprive. Even though I can't tolerate gluten, dairy or soy, I have gluten-free/df/sf chocolate and enjoyed my first gluten-free/df/sf pizza last night. I also realizedhow celiac disease influenced a lot of what I thought were ED habits (like not wanting to eat because I didn't want to hurt and wanting to purge after eating when I started to hurt again).

BURDEE

[Merika]

Hi Tangerine,

I don't have any advice, but can tell you that the same thing happened with both me & my mom (also celiac). We felt sooo much better for several months after going gluten-free, then started to feel bad. My mom's been gluten-free now for 2 yrs and is feeling much better. I've been gluten-free for 1 1/2 yrs and am starting to feel better again. We have both been super super gluten-free with our diet.

My theory is that 2 things were going on for us. First, immediately post gluten-free, we felt SO MUCH BETTER that it was incredible. But our bodies were still so damaged, and we still felt like such crap, and it only became really apparent after the initial high of going gluten-free wore off. We started to feel all the other stuff that was wrong, after the numbness of eating gluten wore off.

Second, we both have other food allergies that it took us a long time to figure out and implement in our diet. Blood ELISA allergy testing was very informative. In time, I am hoping these allergies will go away. Most of my mom's already have, but she's still really careful with her diet.

I lost weight for a full year after going gluten-free. Last spring I finally gained about 5 pounds. I am still skinny. I hope hearing this helps. There is hope, and you will get better, but those doctor quotes of 6-12 months for *the gut* to heal do not apply necessarily to the *whole body* and it may take you shorter or longer to really feel better.

Merika

[Tangerine]

Wow! sorry this took me so long to respond... thank you all for your comments. It feels good to know there are a lot of other people out their dealing with the same things I am.

I have been uber strict on my gluten-freeness, and also am dairy free. But I'm confused on the whole Casin thing? Should I avoid that as well?

I know my celiac disease now makes me feel hungry all the time and want to binge... but I am starting to reform my ways more and Know that that feeling of hunger goes along with my healing. I have a very strong suspision that a lot of people with ED's or disordered eating could have celiac disease or other intolerances. That would be an awesome study to conduct.

I'm not scared about gaining weight really... beacuse I went from 100 lbs, to my current 128, which is a lot healthier thank god! I'm was just concerned about losing weight without trying to I guess.

My ED went from depravation/ border line anorexic to a binge eater... no purging or over exercising. That is how I gained so much weith over the past year, but about 20 lbs of it I deparetly needed. Now i'm just trying to get over the whole thing. I feel like I'm getting stronger everyday.

thank you all agan for your heartfelt responses!!!