Questions - Diagnosed With Celiac Yesterday

[faegan]

Yesterday I received my confirmatory diagnosis via biopsies taken with an endoscope. I have a million questions, but right now I'm wondering mostly what to expect in terms of changes in my body over the course of the next weeks and months. I'm really kinda skinny, which I assume is from this disease. Will I definitely gain weight? I hope so because I've always had to fight to keep my weight up. It would be nice to be able to maintain weight. I haven't had a bone density test yet, but I assume it's not good because of problems I've had with my joints, bones in my feet, and bone spurs in my neck (which has cause degenerative disc disease). Just curious what others experienced in terms of body changes when they switched to gluten-free. (FYI - I'm a 34-year-old male)

Thanks!

[Jnkmnky]

Some people who have been sick a long time find themselves feeling pretty crappy for awhile... how long were you sick?

Some people feel great right away. There might also be some kind of withdrawal from the gluten particularly if you have a very leaky gut causing a lot of Peptides to get into your system. They have an opiate like effect and can be quite addicting...yikes!

You should go dairy free initially. Dairy causes the same doping effect and can be a source of problems if your villi are severely damaged. You wont' be producing a lot of lactase enzymes so you may be uncomfortable.

Kinnkinnick.com has lots of great gluten free foods that are also dairy free! And the products taste great even it they're pricey.... spoil yourself during the early phase! Less depressing when you can have good pizza and donuts, ya know!? Tinkyada pastas are the best. Try to find them at WholeFoods or whatever health food store you have near you. Other pastas are kinda .. gross. You'll really start feeling better the quicker your villi heal and you can absorb nutrition again. That's why keeping dairy out initially is good too, becasue you'll cause less inflamation that way and heal faster.

[Rachel--24]

Some people find they have to really tone down their diet in the beginning. For me...I've had to avoid alot of the processed foods and keep my diet kind of plain. I guess it depends on how damaged the intestines are....I agree about avoiding dairy. Dairy can definately get in the way of healing. I think alot of factors come into play when it comes to recovery time. How long were you sick? What is your age? Are you otherwise healthy? Are you a fast healer? ETC... Kids seem to heal alot faster then adults do. The first 6 months may be kind of up and down or you may find you steadily improve. Everyones different. Good luck and welcome to the board!

[Lisa]

Welcome to our world. So many of us can help you go through this process step by step. Several of the posters are experts in various fields and I am sure that they will be helpful.

To begin with, keep your diet simple. Meats, Chicken, Fish with salt and pepper, lemon juice, olive oil...nothing real spicey. Eat lots of fresh steamed veggies, potatoes, rice (I always add Herb-ox boulion - gluten-free). Keep your diet simple until you can learn about what you can eat and what is not good. We can help you work through that.

Check anything that can get into your mouth, ie., shampoo (Dove), Soap, (Dove), Crest toothpaste, are all gluten free.

Also check your meds. I don't know what you take or what your needs are, but Aleve is gluten-free, zantac is gluten-free. Many meds have fillers that have gluten in as binders.

Then we will bet into the Delfi Product List, that will tell you which products are safe to purchase.

Overwhelmed yet? Don't worry, it takes time and alot of reading. But it gets alot easier as time and reading goes by.

1. Eat simple - easy on the spices

2. Lots of veggies - good vit's

3. Check meds - for gluten

4. Get someone here to send you the Delfi List

5. Check personal products - for gluten

6. If gluten free for a few weeks you will feel better

7. It may take up to many months to really feel better

8. It may take up to two year, if careful, to feel really good

9. I will take you about two days to feel really pissy

10. It may take you 10 days to be pissed

11. After you get pissed, you realize that you really want to feel better

12. You devote yourself to the diet because you don't want to feel like crap anymore.

13. You begin to grasp what you are preventing in your life.

14. You realize that you don't want to die of intentinal lymphoma or other related diseases.

15. You are dedicated to the diet

16. You are now in control of your life.

[Guest nini]

you've gotten some great advice so far.

I can send you the Delphi list as well as my Celiac Newbie Survival Kit... a bunch of files I wish I had when I was newly dx'ed. just e-mail me at nisla@comcast.net and put request newbie survival kit in the subject line. I will send you the files as soon as I can.

There are many ups and downs to learning the diet and dealing with this disease, but after you get the hang of the diet and start to feel better, you will be so much better off. A lot of Dr.s will expect that you will be completely better in 6 months. This is false. On average it takes a good 2 years to feel "normal" but within a few weeks, maybe even days you may start to notice a definite improvement. You will probably experience some withdrawal symptoms, be kind to yourself. Find some safe gluten-free goodies that you love to spoil yourself with during this time. My comfort food is Hershey's dark chocolate bars or M&M's... my daughter's is Kinnikinicks chocolate dipped donuts. You will also probably make some mistakes as you are getting used to the diet, and you will eat something that you assume is safe and find out later it's not. Again, be kind to yourself, there is a learning curve and it takes time to get the hang of it. Also, use the lists you get as a starting point, but ALWAYS read the labels even if it's a product that is on the list, companies are notorious for changing ingredients on us. With the new labeling laws in place in the US this at least is a little easier.

[faegan]

First of all, THANK YOU, for your generosity! You all rock!

I should provide a little more detail about my case. I am 34-years-old

and can now look back and remember symptoms that go back at

least to the beginning of high school, which means almost 20 years.

I have had a problem with "rentals" (food in, food out immediately)

for at least that long. I am the shortest, skinniest male in my family

(5' 9", 145 pounds). My dad is 6' 3", 215 pounds, my older brother

is 5' 11", 195 pounds (when in shape). Over the course of the last

5 years, my problems in the bathroom have gotten worse. However,

I have to say that it's not an every day issue. I'm generally fatigued,

often have problems concentrating, and I have the bone/joint/disc

problems I described above. There's more, but I don't know what is

and isn't related to celiac disease. I do generally heal or get well

quickly when I'm injured or ill. I'm still reading/digesting all of the

wonderful responses, but wanted to reply as quickly to your messages

as you did to mine! Thanks again and I'm sure i'll have more

questions!

[TCA]

Welcome to the board. This is the place to come for answers. I wasted way too much time on doctors before coming here! I would suggest that you start with a very simple diet - veggies, fruit, and meat, and then add other products slowly. I'm still learning myself, but I think if you do this it is easier to find source of cross contamination and hidden gluten that have confused us so in the beginning. There are a lot of great products out there. You sound about the size of my husband. He's also a lot smaller than other family members. My son was starting out on the same path until we found celiac. He's doing great now. Good luck and I hope your health improves soon. let me know if you need any food lists or anything. We've all been there and are here to help.

[tiffjake]

I lost weight, but I was over weight to start with.....but I felt better almost right away. No migraines or stomach problems within a week. I am 23, so I haven't had some of the ongoing problems. But I will say that you are "lucky" to have a diagnosis, because some people never get the docs to agree with them, like me, though I have test after test. Anyway, good luck to you. This board is very helpful!