New And Lots Of Questions,patience Please!

[kristenroman]

Hi everyone. I was diagnosed three weeks ago with celiac. I am still a little in shock. I went in for an endoscopy because of stomach problems. No one was thinking celiac. My mom has celiac and has bugging me for years to take a test for it, not because of obvious syptoms but because of anxiety and panic attacks. Which, thank God, I no longer suffer from. SO I told my doctor, "While you are in there please take a biopsy for celiac so my Mom will leave me alone!" LO and behold it came back positive. I live in Mexico. There is so little info. here. Please everyone, I know this disease is hard to live with, put count your blessings that you live in a country where you can buy gluten free food! I felt so horrible, stomach upset, cramping and burning that I immediately started a gluten free diet. Found that i felt better the first week ( I think it was more hope than anything else) because these last 2 weeks have been tough again, although I am on a strict gluten free diet. So here goes my questions, (please be patient with me, I do not have a doctor here who knows much about this.) First, how long does it usually take to feel better??? This is going to sound weird, but I seemed to get more intestinal pain and bloating after killing the gluten. Before it was mostly stomach issues. I figured my body was in detox, since my old diet was probally 90% gluten. I lived on bread and pasta and little else!! IS that possible, to have an inicial negative response to the antigluten diet??? Also, maybe I am in denial, but could the biopsy have been wrong? Is there any other disease that causes stunting and atrophy of the villi? I didn´t do the blood tests because I had already gotten rid of the gluten and didn´t want to start again. Plus the guy at the lab looked at me like I was crazy. He had never heard of those blood tests!! Also, can you have celiac with no diarrea ever and mostly just stomach stuff? although recently I have been very bloated and uncomfortable in the abdomen area. I guess I just want to feel better, and need someone to tell me it just takes time and to be patient. I have this thought in the back of my mind that maybe I am doing this crazy diet in vain and it is not going to help. My doctor thinks the stomah issues might be unrelated to celiac and are caused by my nervous system in which case he suggested Zoloft. What do you guys think? Any opinions on that? Thank you for your patience. I am usually no so long winded!!! (My husband would be laughing if he heard that!)

Blessings, Kristen in Guadalajara, Mexico

P.s. Please someone send me something gluten free and fun! I am getting tired of corn tortillas! (Just kidding they have great corn tortillas here!)

[Canadian Karen]

Hi Kristen! I am so glad you found us! There's a great bunch of people here who are very supportive and knowledgeable and always willing to help out! First rule you must remember: There is no such thing as a silly or stupid question on this forum - feel free to ask ANYTHING! You will find patience, trust me...

Now, down to business: You, my dear, have celiac. No two ways about it. Set your doubts aside. If biopsy was positive, you've got it. There are such things as false negatives, but no such thing as a false positive. They saw villi damage - you've got it. Couple that with the fact that the reason you went searching for answers is because you have intestinal issues, that is a double confirmation. Gastro difficulties + positive biopsy = celiac.

Every person heals differently and at a different pace. It depends really on the level of damage done and how careful you are on the gluten free diet. Some people see results almost immediately, others can take over 1 year or more..... Think of it this way: It took many years to get to this point of damage, it will take some time to undo the damage......

Have you checked all your medications, vitamins, make-up, lotions, shampoos, to make sure they are gluten free? Have you gotten your own toaster? Have to ruled out cross-contamination by bakeware, cooking pots/utensils? (teflon pans hide the gluten and can contaminate food that is cooked in them)...... Have you stopped licking envelopes/stamps (the glue can contain gluten).........

I also used to suffer from panic attacks/anxiety attacks. I literally thought I was going to die during some of them and the only person who could calm me down was my sister. After going gluten-free, they stopped..... Haven't had one of those in years....... Same as the heart palpitations. I used to get those daily, but they are gone now too........

The best advice I can give you is to read, read, read..... There is a wealth of info on here that will help you down the gluten-free road. We have all been at the beginning of that road, so any questions you feel you need to ask, go right ahead - we'll help out in any way we can!

Welcome and hugs!

Karen

[Guest nini]

welcome, and I'll try to answer your questions. As far as I'm aware of Celiac is the only disease that truly causes blunting of the villi so if the biopsy was positive AND you have a genetic predisposition (your mom) then yes, you do have this. Thank goodness you found out now while you don't have massive symptoms. The longer you stayed on gluten the worse they would have gotten.

As far as the diet is concerned, there are a ton of foods that are natuarally gluten-free, and while I'm sure it would be harder in another country to find specialty foods, stick with foods that are naturally gluten-free. Like plain meats and veggies and fruits (you can use fresh herbs to season these any way you want, rice, potatoes, quinoa, hard cheeses and on and on... other products you may have to verify with the companies that they are safe, it may require more work on your part initially, but you may be pleasantly surprised if you find thinks like flavored yogurts, sauces, and other prepared products that are naturally gluten-free.

I know even I get sick of corn tortillas sometimes, but they are good and cheap! Traditionally made tamales should be naturally gluten-free (but just double check) Also, I've found that MOST Traditionally made Mexican foods are naturally gluten-free. Of course you need to avoid if they use flour tortillas or flour to thicken sauces, but you should be able to find dining cards that you can take with you that will explain to the people making the food what you need to avoid.

How difficult is it to ship specialty products into Mexico? It's been years since I was in Mexico so I don't remember what is allowed or not (visited some areas with grandparents when I was little)

Oh, and I do believe that Kahluah is naturally gluten-free! And so is most coffee! (Love a little Kahluah in my coffee) well at least I used to before I developed an aversion to all alcohol.

[Canadian Karen]

Hey Kristen, I'm glad that nini chimed in because at the bottom of her signature, click on the link to the Newbie Survival Kit - it will help you immensely!

Karen

[Guest cassidy]

Everyone is giving you good advice. It does take time and I went through a lot of emotions in the beginning. I was in denial then angry and it took a while for me to accept things. Definitely try to eliminate all the hidden gluten as soon as possible. It took me two weeks to be able to realize when I was glutened because the first two weeks I felt crappy still. Now, if I get glutened it takes a full month for all my symptoms to go away although I do feel better and better during that time.

So glad you figured out what is wrong - that is a big part of the battle. Can you order food from the US online and have it shipped to you? I realize that would be expensive but you could do it as a treat. In the beginning I recommend eating a very plain diet - meats, veggies, fruits to give your body time to heal. Many people have problems with dairy and processed foods can be challenging as well.

Good luck, you will get better and this is a great source of info.

[Jestgar]

Hi Kristen,

I don't have any better info to offer, I just wanted to offer another shoulder to lean on as you get used to a new lifestyle.

[GFBetsy]

Just wanted to add a "Welcome"! Just wanted to second the suggestion that you stick with "naturally" gluten free foods for a while. Potatoes, rice, beans, meat, plain spices (rosemary, thyme, chili powder, etc . . . some of the spice combinations include flour, so check labels). Check out the cookbook "Saving Dinner" for evening meal recipes that are fabulous. (Not all of them are gluten free, but most of them are, and they're all good.)

Are you going to be living in Mexico for a long time? It sounds a little as though you are originally from the States . . . so the lack of specialty products may not be a permanent situtation . . . and if you can get some xanthan gum and some gluten free flours, you can make breads/cookies/cakes, etc. from scratch.

Good luck, and stick with the diet . . . it gets easier, and you'll feel better. Just give yourself a couple of months (at least) to heal.

[Ursa Major]

Hi Kristen, and welcome to this board. It is too bad that the doctors and labs in Mexico are even more ignorant of celiac disease than in the US and Canada (which seems hardly possible). The idea to use Zoloft instead of the gluten-free diet is an insult! Doesn't that doctor know that depression, anxiety and other emotional/psychological problems are typical celiac disease symptoms?

You know, many people with celiac disease are asymptomatic, some get diagnosed with the only obvious symptom being anemia. Not nearly everybody with celiac disease has diarrhea and weight loss.

It takes time to heal. You may also have other intolerances. Pretty much everybody with celiac disease has, at least initially, a problem with dairy. You may not feel better until you eliminate all dairy (and possibly soy) as well as gluten. Oh, and by the way, dairy and soy can stunt the villi too, if you're intolerant to them.

Have you checked all your personal care items (shampoo, conditioner, lipstick, soap, lotion, toothpaste etc.) for gluten? Look for things like wheat germ oil, oat bran and barley extract. You will need to replace the ones with gluten, they can definitely be a problem.

Do you have kids? Play-doh has gluten. It can hide in many places. You might still get glutened from sources you never suspected, it is tricky. Do check out Nini's newbie kit, it will help weed out all those crazy sources.

[covsooze]

Hi Kristen, good to have you here

From reading this board, it seems to me that lots of people (myself included) feel loads better the first couple of weeks of being gluten-free, then feel rubbish again for a while. I wonder if it's because the body initially breathes a huge sigh of relief at not being fed gluten, and then a couple of weeks down the line decides it time to get healing. Just my own theory there! Certainly, it also takes a while to root out all the possible gluten.

In a strage way, you are probably fortunate not having access to specialist gluten-free food - lots of people on this board recommend keeping the diet naturally gluten-free and simple, at least to start off with, to aid healing. Lots of people (again including me) find that they develop problems with other ingredients in gluten-free food and end up simplifying anyway.

As Ursula said, psychological/ emotional symptoms are actually very typical of coeliac - in fact I think the depression/ anxiety/ brain fog etc have been worse in many ways for me than the stomach issues. Unfortunately, a lot of drs (not just in Mexico) don't seem to realise/ accept this. We need to educate them! If you really need something like zoloft to get you through the next few months whilst you heal, you might want to look into that possibility, but it should certainly not be a replacement for going gluten-free.

Take care

Susie x

[daffadilly]

welcome to the board, sorry you are not felling well. I have talked to several people like you that were virtually eating nothing but wheat before diagnosis. somehow those people seem to be able to eat the wheat, all the while it is damaging their intestines and all other foods give them stomach aches etc.

I would also like to second the advice about not adding in the gluten free goodies yet. It is much better to eat plain whole foods and let your body heal, knowing that your diet will not be like that forever. Eat things that will be easy on your system like applesauce, cooked carrots, cooked white rice in chicken broth, some chicken soup - homemade - boil chicken add carrots, cabbage, maybe some onion and celery. baked sweet potatoes are nutritious and good put a little brown sugar on it, spaghetti sauce is good over rice.

You might want to be careful about beef, it is hard to digest, but you might be able to handle it fine...

I highly suggest you give up dairy, until you are feeling better and can try adding it back in when you can tell if it gives you any problems (most people starting out that are having problems have to give up dairy for awhile)

eat as many fresh fruits and veggies as you can, adding them in slowly to make sure you are not reacting to them. I hope you are feeling better soon...

Oh also you should take a gluten free B12 everyday, most of us are low on B12 - you will feel like a different person on B12 !!!!

[Guest adamssa]

hi kristin,

i would definitely hold off on taking zolofot for your your stomach..because isn't that for anxiety/depression? if so, don't take it! celiac, i think does cause depression and anxiety which will ease up with time off of gluten, adding a powerful med to the mix will give you new side affects.

good luck

sara