Still Very Sick!

[Elizabethjohnson-1991]

HI my name is Elizabeth and i'm 22 years old. I just got diagnosed with Celiacs last year. I also have severe deadly food allergies to soy and all nuts. I was sick for years constantly going to the doctor insisting something was wrong. She just kept telling me it was all in my head. Eventually I get diagnosed which was very sad for me as I loved everything with gluten very much!! I thought well this is great ill finally feel better! Like a normal person! I started eating a lot of gluten free replacement foods( the ones without soy and nuts anyways). I felt a little tiny bit different(not much) and when I tested again 6 months later my iga levels had dropped for 79 to 16. But then this past summer hit. Suddenly my allergies became even more severe. I went into anaphylactic shock 3 times over the summer(because of my strengthened immune system). Also the intense burning in my intestines started coming back with nausea and being very tired. I would also wake up every few weeks with waves of such intense upper intestinal pain I would get drenched in sweat and almost black out. This december I started to get very very bad. By the end of december I couldn't walk my joint pain was to severe. I would start crying just from holding my hands open. I was also so exhausted just sitting up in my bed felt the equivalent of running a marathon. So I thought whats going on?? Wheres this hidden gluten.. It turns out a medication(BC pill) I was taking daily had change their ingredients to wheat starch. I went off of it and my energy came back within a day. My joint pain was gone. That was almost three weeks ago and my intestine is still very tender and just walking around or going over bumps in the car is very uncomfortable. Im now cutting out everything that doesn't have just one ingredient. Yeah its terrible and zero fun but i'm getting very close to a total break down! It feels like Ive been sick for years! Im 22 and I see my peers having fun and being young and I can barely get out of bed. Im starting to lose hope because looking back on the past year that I've been gluten-free and Im almost sicker then before.. Its heartbreaking because I thought I would go gluten-free and everything would be fine. Has anyone else had to cut all the gluten free replacements and snacks out of their diet? Was it worth it? Because I'm desperate to just have one month where I feel 100% everyday, because its seems like that will never be possible for me. 

 

[GFinDC]

Hi Elisabeth,

 

Welcome to the forum!

 

I know it can be hard to feel sick and weak for a long time.  It takes quite a bit of patience to deal with some of these things and faith that it will improve over time.  It may not be a quick fix, but getting your diet right will make a positive difference over time.

 

I also had reactions to many gluten-free products for a long time after going gluten-free.  It took more than a few days for me to get to feeling better.  The auto-immune reaction in our bodies is not a light switch type of action.  It turns on fast but turns off slowly.  So we have to be careful always to avoid even tiny amounts of gluten in our diets, meds, vitamins, drinks etc.  They good thing is that over time it gets to be more normal to avoid these things and more a habit to check everything.  And as your gut heals you may find you can tolerate things better also.

 

In the meantime you are learning a healthy way of eating that avoids many chemicals, preservatives, food colorings, and just plain junk that most people eat without a second thought.  That knowledge can help you your whole life as you feed your body with good, healthy foods instead of a chemical smorgasbord.

 

I had bad hayfever before going gluten-free but after a while my hayfever reactions tapered off significantly.  Maybe your will get better too, not sure.

 

You are doing the right thing by sticking to whole foods instead of processed foods for now.  After a couple months you might want to to expand your diet.  But try to do it in a planned, controlled way.  Adding one new food item a week, and backing of it if you have reactions.  Another thing that helps some people is a food journal listing foods eaten and how they feel each day.  When you aren't sure if something is gluten-free, try searching on the item and gluten  on the web or on this forum.

 

You aren't only one who has made a mistake about ingredients, we all do it at times.  or have done it in the past.

 

Here's some tips that some newbies find useful:

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy if it causes symptoms.
Avoid sugars and starchy foods.
Avoid alcohol.
Watch out for cross contamination.

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/
 

 

 

 

[Pegleg84]

Hi Elizabeth, welcome to the Forum!

 

It sounds like you've had a rough time. Having severe allergies on top of Celiac Disease is not an easy road, but good news is that if you can get a handle on things now, the rest of your life will just get better. Promise.

 

Anyway, if you're getting better off the BC (have you found a substitute?), then likely that was the source of the glutening and you should keep getting better as long as you stick to a strict 100% gluten-free (and soy and nut free) diet. It sounds like you're quite sensitive, so sticking to whole foods, cooking all your own meals, making sure there's no gluten in any other products your using (anything that goes on your hands or face, or could get on your hands or face, is probably better to be on the safe side). You don't necessarily have to cut all gluten-free subsitutes for ever, but cutting them for a month as you're trying to do is probably a good experiment.

 

I'm kind of accepting that even with a 100% clean diet, we're never going to be 100% every day. However, even 90% most of the time is a million times better than being sick all of the time. Sticking to the diet, eating at home, being super super careful can be a pain in the arse, but it's worth it. You will get better. It'll take time, but you're young and healing now means you can avoid a lot of the long-term complications of undiagnosed Celiac. Basically, treat gluten the same you would soy or nuts. It could kill you! Sure, it won't do it overnight, but it will make your life miserable and that's bad enough.

 

Anyway, others will chime in with other advice. You can read the "Newbie" post at the top of this forum with lots of good tips.

Keep at it and good luck!

[cyclinglady]

Elizabeth,

 

Sorry to hear that you were so ill!  Glad to hear that you are getting better and that you must be diligent and research everything that goes into your mouth -- including meds and don't forget lipstick!   I think you will start to feel better in a few months or so.  Since you were being glutened (even though you thought you were gluten free) it's like starting all over again and you need to heal.  

 

Eating whole foods is a good strategy.  Keeping a food journal will help you discover other food intolerances.  I am allergic to garlic, cow's milk (casein and whey), eggs and nuts!  It's such a drag.  I found out about my allergies long before I was diagnosed with Celiac Disease.  These foods are the same foods that others in my family are allergic to as well (except for the garlic and in this case I'm unique!)

 

Anyway, it's a drag carrying around an epi-pen, but lots of my family members have to do it!  We are allergic to other things like bee stings and some drugs (NSAIDS) too -- not to mention the dreaded tree pollens!  

 

I do make my own cupcakes and goodies since I have discovered that I have an intolerance to Xanthan Gum which is in so many processed gluten free foods and I still have issues with gluten-free oats and quinoa.  I am hoping that over the long term, these intolerances will go away.  I don't think my allergies to milk, nuts, etc.  will every improve.  

 

Take care and don't give up.  You just need time to heal.  It's hard to be patient.   You will get better!  

[BelleVie]

Oh sweetie, I am so sorry to hear you are going through this. I'm 25, so I know what you mean about seeing other people just doing their thing, being young and active. It's tough. Thank goodness you figured out what was going on with your birth control pill! 

 

I know that many people on this forum have a drawn out reaction to even one tiny glutening, so if you've just come off the pill and are starting to feel better but are not 100% yet, I think it's a good sign that you ARE feeling better. It can take a long time to rebuild your strength. It took me a good three months to start having more than one good day in a row. 

 

Yes, it sucks to not be able to eat the convenience foods and the snacky things. I LOVE those things! But I think that once you get going on an eating plan of whole foods, eventually you will not be able to imagine any other way. As the aphorism goes, "Eat to live, don't live to eat." Some foods taste great, but FEELING great always trumps tasting something yummy that is a fleeting experience, at least, that's my opinion. 

 

Hang in there. Hopefully you'll have one good day, then another, then another, and before you know it, you'll start to feel normal.  Big hug! 

[Elizabethjohnson-1991]

Thanks everyone so much! I feel so alone most of the time, I get sympathy but no one understands! I'm getting such severe joint pain everywhere still. RA runs in my family I really hope I don't have that on top of everything else! I don't know what I would do.. I;m so glad I wrote on here! I really feel the support:)