Honest Confusion

[TightLoli]

I've been going through quite the conundrum recently.

I was Dx'd quite a while back, I'd say roughly 6 years ago, but at that time I was only 12 or 13 (I'm almost 19 currently) so I had no understanding of the disease at all. I was going through very traumatic events during my Dx time period so my mother wasn't too informed on the disease either.

My symptoms were not too extreme so I just continued eating normally until I decided that I obviously am not suppose to feel those symptoms by nature, and I went gluten free for about 1 month (around February 2012). I felt incredible that 1 month, it was the best I've ever felt in my entire life by far. I guess my will was weak so I went back to normally eating and now I'm gluten free again (probably 2 weeks in).

My problem is this time, I honestly don't feel too much better. I still get bloated almost always but my bowels are a little more regular. I'm just honestly confused because I don't know what I'm doing incorrectly.. I'd like to this I have a decent understanding of this disease, I know exactly what to eat and what I can't, and I cautiously read every label before I eat anything.

My hair has fallen out A LOT starting about 6 months ago, and keeps getting worse, although it was slightly better during my first gluten-free run. I'm not sure what to do about this..I don't want to use Rogaine if it contains wheat germ like it does. I use a gluten-free shampoo and DHT blockers but they aren't doing shi*.

I know I'm just going to have to wait it out because it takes time from what I've researched, but after just 1 month of my original gluten-free trial I felt better probably the first few days.

What to do..?

[Juliebove]

I'm no expert but I'd be willing to say that you've caused so much damage by now from eating the wrong things that it will take a long time to heal. Also are you sure that everything in your kitchen is gluten-free? No cross contamination?

[TightLoli]

I live with two people that have no understanding of the disease at all, so I'm going to say that it's a good possibility but I'm pretty cautious when cooking, and I stick to mostly simple things.

[kareng]

Do you share pb, margarine tubs, jelly, etc? A toaster? A colander? These are the easiest ways to get gluten when you think you are OK. People put some jam on thier toast then stick the knife, with toast crumbs back in the jar to get more. Colanders are so hard to get all the gluten pasta out of each little hold.

I agree with Julie that you have been destroying yourself for so long, it will take much longer than 1 month to get better. You might want to cut out dairy for a few months, too. The part of the intestine that is damaged is responsible for dairy digestion.

[Adalaide]

Once you've verified that you aren't getting cross contamination or missing something it's more or less a waiting game. The longer you eat gluten the more damage you cause. I'm coming up on my 5 month mark since going gluten free and while I feel better, I don't feel good. I'm no longer a living biowarfare weapon, which is awesome because I don't spend half my time opening windows and turning on fans or seeing how long I can hold my breath. I don't have rampant bathroom issues, although I wouldn't call myself quite right in that department yet. I've had some trial and error (plenty of error) in getting things right in the kitchen. A lot of people will advocate a whole foods diet while you heal, avoiding all of the replacement foods. I think that's a splendid idea but I just wasn't emotionally ready to give all that up when I started out.

I generally consider myself to have willpower approximately equal to that of a goldfish. Somehow (not sure how but I'm confident it's some sort of miracle) I've managed to resist temptation so far. As difficult as it is for me, I've accepted that this will be a long road for me until I feel like a person again. It isn't easy, but you aren't alone. Lots of people have been there and when you find your willpower faltering, you can come here and borrow some of ours.

[TightLoli]

I don't share any items really with the rest of my family, but maybe I'm eating out too much at so called safe places (Chipotle, Panera). I just honestly..don't know what to eat.. I'm only 18 and I don't really know much about cooking but I'm pretty industrious so I'm ready to figure it all out. I just eat a lot of sandwiches with Udi's and baked chicken, rice, potatoes. Fruits, Veggies, etc..

I'm trying to go lactose-free which is even more limiting, but, so it goes!

[kareng]

I wouldn't call a place where employees come home with a layer of flour on thier clothes a safe place to eat. ( Panera).

Read the what's for dinner thread to get some ideas. Maybe get a crockpot. You can throw some meat & beans & salsa & veggies in it and have dinner in a few hours.

[TightLoli]

Funny thing is, I actually work at Panera, close to a management position too. Unless you're a baker at night, you will never be handling flour at all, maybe a SLIGHT possibility of rice flour. I don't really want to quit working there since I really like it and it pays very well, but I will if it is the best idea for my health.

[beachbirdie]

I've been going through quite the conundrum recently.

I was Dx'd quite a while back, I'd say roughly 6 years ago, but at that time I was only 12 or 13 (I'm almost 19 currently) so I had no understanding of the disease at all. I was going through very traumatic events during my Dx time period so my mother wasn't too informed on the disease either.

My symptoms were not too extreme so I just continued eating normally until I decided that I obviously am not suppose to feel those symptoms by nature, and I went gluten free for about 1 month (around February 2012). I felt incredible that 1 month, it was the best I've ever felt in my entire life by far. I guess my will was weak so I went back to normally eating and now I'm gluten free again (probably 2 weeks in).

My problem is this time, I honestly don't feel too much better. I still get bloated almost always but my bowels are a little more regular. I'm just honestly confused because I don't know what I'm doing incorrectly.. I'd like to this I have a decent understanding of this disease, I know exactly what to eat and what I can't, and I cautiously read every label before I eat anything.

My hair has fallen out A LOT starting about 6 months ago, and keeps getting worse, although it was slightly better during my first gluten-free run. I'm not sure what to do about this..I don't want to use Rogaine if it contains wheat germ like it does. I use a gluten-free shampoo and DHT blockers but they aren't doing shi*.

I know I'm just going to have to wait it out because it takes time from what I've researched, but after just 1 month of my original gluten-free trial I felt better probably the first few days.

What to do..?

Other possibilities: If you have been eating gluten for so many years, it is possible that you have developed nutritional deficiencies due to malabsorption in your intestines. If you are low in vitamins and minerals, protein, you will see hair loss.

You might also find out about getting your thyroid checked. Thyroid problems are notorious for causing hair loss, and autoimmune thyroid conditions very often come along with celiac because they share some gene space.

[Juliebove]

Funny thing is, I actually work at Panera, close to a management position too. Unless you're a baker at night, you will never be handling flour at all, maybe a SLIGHT possibility of rice flour. I don't really want to quit working there since I really like it and it pays very well, but I will if it is the best idea for my health.

Yikes! No wonder you don't notice a difference. Maybe you're not handling flour but it is all around you and most likely you are touching the bread. Right?

[dani nero]

Funny thing is, I actually work at Panera, close to a management position too. Unless you're a baker at night, you will never be handling flour at all, maybe a SLIGHT possibility of rice flour. I don't really want to quit working there since I really like it and it pays very well, but I will if it is the best idea for my health.

If it's a place where a lot of baking goes on, you might be either inhaling the flower through your nostrils, or you might not be washing your hands properly when it's time to eat. You can have gluten stuck even under your nails. You need a safe place to prepare all your meals (preferably at home).

I don't even set foot in a place where I know any type of baking goes on. To me it's like asking for trouble. You can't help it if you work there though, so pack your lunch from home, and wash your hands before you even touch your box/ bag.

[MitziG]

Agree with all of the above, and glad to hear you are committed to the diet now. It is unfortunate your doctor did not not make sure you and your mother were more informed of the long term consequences of eating gluten.

Definitely go to the doctor now and request a FULL thryoid check which should include TSH, TPO, Free T3 and T4 and total T3 and T4. Celiac destroys your thyroid. It would also be a good idea to get celiac bloodwork done to have an idea where your antibody levels are now, so that 6 months from now, if you still don't feel better, you can have them rechecked to see if they are falling. If they continue to stay elevated, it is a good indicator of cross contamination, whether that be at your job or at home. Or both.

Also request a check of all the fat soluble vitamins- A, D, E and K. Check B12, B6, folate, total iron and serum ferritin.

Do not let your doctor dismiss the necessity of this. Many docs are pretty ignorant about what celiac does to a body, so you will have to be assertive.

Hopefully, whatever damage is done can still be resolved with strict adherence to the gluten-free diet, but be aware that it can take awhile. Many of us, myself included, went undx'd for years and it took many months to even notice a difference in the way we felt. Don't get discouraged, you are doing the right thing!

[bartfull]

Flour dust settles on everything. Every time you touch ANYTHING at work you are getting it on your hands. As much as you love your job, if I were you I would find another way to make a living.

You may find, even if you go work someplace else, that you will develop intolerances to other foods. For me it was corn and nightshades. Whole foods are the way to go. The only grain I eat now is rice.

I can't help but notice you are a bass player, and from the picture, it looks like you are in a band. Sounds crazy, but maybe while you are looking for other work you could teach? I know it's almost impossible to make a living playing music nowadays, but I became a guitar teacher and eventually opened my own music store. (I would jokingly say it is a gluten-free music store, but I actually let the regulars bring their own cookies. They just have to clean up after themselves.)