Newly diagnosed

[jasmine24]

 

Hello everyone, 

 

I have been following this board for a few weeks now, since my blood tests came back positive. I got the results from my endoscopy on Monday, so I officially have been diagnosed with celiac disease. 

 

A little background about me: I'm a 24-year-old female. I started having digestive issues 4 years ago, a few weeks after the sudden death of a very close friend. There were several other very stressful things going on in my life at the same time. I had never dealt with that much stress in my life before then so I assumed my digestive issues were just due to that, and didn't worry about it for a while. By about 6 months in, I had lost over 30 pounds that I didn't have to lose, was having loose stools and/or vomiting daily, was extremely anxious, started getting acne again, and almost daily headaches so I finally started seeing doctors and trying figure out what was going on. 4 years, FOURTEEN different doctors, and tons of money and time wasted trying to figure out what was going on with me---I finally have my answer. 

 

I will say I learned how to manage my symptoms and pretty well after the first year and gain back some of the weight I lost by loading up on over the counter meds and taking digestive enzymes every time I ate, so I was able to feel decently normal most of the time. I also wonder if I've had this for longer because I have always had issues with anemia (even when I was a kid) and I've always had poor enamels and teeth problems, but other than that I was always really healthy until 4 years ago.

 

I'm very grateful to finally have an answer and to know that this hasn't been "all in my head" and that I'm not going crazy. I'm also very thankful to have found a great GI doctor who diagnosed me and seems to actually know/care about celiac disease (lucky number 14?)  and to have found this forum because there is so much great information here. 

 

Now the fun part...learning to actually live like this. I've done a lot of research and I'm not too worried about staying gluten-free at home, but I am worried about eating out, social situations and traveling, especially traveling. I got married last year. My husband is very supportive, but he wants us to start traveling more and now I'm worried if I'll be able to do that. We also have lots of family that lives in other parts of the country that we travel to and stay with for several days at a time or more. Any tips for how to deal with that?

 

Do you recommend having the whole house gluten-free or not? Its just me and my husband right now (but we plan to start having kids in a year or two) and he said he's willing to be gluten-free in our house, I'm just trying to decide if that's the best thing to do or not.

 

What were some of your go-to meals during the initial period after diagnosis? I've read its best to keep it simple and avoid most of the processed gluten-free food and dairy while healing, but when searching gluten-free recipes lots of them include that.

 

Sorry for the long post, I'm probably getting ahead of myself on some of this, but I just wanted to share my story and welcome any and all advice! Thank you so much  

 

[Digging deep]

2 hours ago, jasmine24 said:

 

Hello everyone, 

 

I have been following this board for a few weeks now, since my blood tests came back positive. I got the results from my endoscopy on Monday, so I officially have been diagnosed with celiac disease. 

 

A little background about me: I'm a 24-year-old female. I started having digestive issues 4 years ago, a few weeks after the sudden death of a very close friend. There were several other very stressful things going on in my life at the same time. I had never dealt with that much stress in my life before then so I assumed my digestive issues were just due to that, and didn't worry about it for a while. By about 6 months in, I had lost over 30 pounds that I didn't have to lose, was having loose stools and/or vomiting daily, was extremely anxious, started getting acne again, and almost daily headaches so I finally started seeing doctors and trying figure out what was going on. 4 years, FOURTEEN different doctors, and tons of money and time wasted trying to figure out what was going on with me---I finally have my answer. 

 

I will say I learned how to manage my symptoms and pretty well after the first year and gain back some of the weight I lost by loading up on over the counter meds and taking digestive enzymes every time I ate, so I was able to feel decently normal most of the time. I also wonder if I've had this for longer because I have always had issues with anemia (even when I was a kid) and I've always had poor enamels and teeth problems, but other than that I was always really healthy until 4 years ago.

 

I'm very grateful to finally have an answer and to know that this hasn't been "all in my head" and that I'm not going crazy. I'm also very thankful to have found a great GI doctor who diagnosed me and seems to actually know/care about celiac disease (lucky number 14?)  and to have found this forum because there is so much great information here. 

 

Now the fun part...learning to actually live like this. I've done a lot of research and I'm not too worried about staying gluten-free at home, but I am worried about eating out, social situations and traveling, especially traveling. I got married last year. My husband is very supportive, but he wants us to start traveling more and now I'm worried if I'll be able to do that. We also have lots of family that lives in other parts of the country that we travel to and stay with for several days at a time or more. Any tips for how to deal with that?

 

Do you recommend having the whole house gluten-free or not? Its just me and my husband right now (but we plan to start having kids in a year or two) and he said he's willing to be gluten-free in our house, I'm just trying to decide if that's the best thing to do or not.

 

What were some of your go-to meals during the initial period after diagnosis? I've read its best to keep it simple and avoid most of the processed gluten-free food and dairy while healing, but when searching gluten-free recipes lots of them include that.

 

Sorry for the long post, I'm probably getting ahead of myself on some of this, but I just wanted to share my story and welcome any and all advice! Thank you so much  

 

Hi Jasmine, 

I am awaiting results from my blood to determine if I have a problem with gluten and some other foods.

I did an allergy test for 40 other foods and they all came back negative. 

I  have similar symptoms that you describe in your post and had anemia as a child. A doctor told my parents at the time that I had sickle cell anemia but after many years,  I tested and was negative for sickle cell.

I wanted to ask you if you had any problems with body odor because some people with Celiac disease reported that they struggled with body odor issues before they hey were diagnosed with the disease. 

As to your questions,  if your husband doesn't have a problem with gluten then the whole house doesn't have to be gluten-free.  You just have to make sure you have your own separate section with all your gluten-free stuff to cook your food. (He seems like a real trooper  so he might save you the trouble of having to cook two sets of meals and go gluten-free too)

When you do have children,  get them tested for Celiac disease early to be on the safe side. 

There are some restaurants that have gluten-free menus,  you have to ask  them.

It may be hard at first but I am sure that you will get through ok.

There is a site call pinterest that have amazing gluten-free information and recipes for you to try.

 

[RaRaLorna]

My daughter was just diagnosed with celiac today. She is 7. We have two other children who are younger and plan to do blood tests on all the rest of us now. I plan to go gluten free for the whole household in order to simplify life. . . doesn't seem like there should be any reason to make two meals every time, plus the stress of having to ensure there's no cross-contamination. 

I have many of the same questions as you.... I've also read that dairy is best avoided in the beginning, as well as other grains. So my plan is to use Pinterest like crazy and implement a paleo type diet, which is mainly whole foods based, as well as gluten, grain, and dairy free. This will keep all those other crazy gluten free processed foods from hanging out in our home.

I am curious as to how to travel to see family, too, as are my parents. Hoping more people will reply and give us some tips.

Good luck!

[cyclinglady]

7 hours ago, RaRaLorna said:

My daughter was just diagnosed with celiac today. She is 7. We have two other children who are younger and plan to do blood tests on all the rest of us now. I plan to go gluten free for the whole household in order to simplify life. . . doesn't seem like there should be any reason to make two meals every time, plus the stress of having to ensure there's no cross-contamination. 

I have many of the same questions as you.... I've also read that dairy is best avoided in the beginning, as well as other grains. So my plan is to use Pinterest like crazy and implement a paleo type diet, which is mainly whole foods based, as well as gluten, grain, and dairy free. This will keep all those other crazy gluten free processed foods from hanging out in our home.

I am curious as to how to travel to see family, too, as are my parents. Hoping more people will reply and give us some tips.

Good luck!

Sounds like you have a great plan.  Do treat your daughter to some gluten-free goodies once healed.  It can be lonely not be able to eat cake at a birthday party.  We eat mostly Whole Foods (ugh, spell check....not the store!) but I keep goodies in the freezer Freddy for a party.  I make them myself.  

Travel?  Car, plane?  We do both.  At my parent's house I keep a bin of kitchen items that I keep stashed away from other family members.  I oversee all food prep, because if you do not live the gluten-free every single day, mistakes can be made.  

Try reading through our Travel section for more great tips.   Here is one thread:

 

[TexasJen]

We travel too. I was just diagnosed last year so I am still learning, but I find that it is easier to stay in places with a kitchen and not eat out for every meal.  It's too much stress!

The way I see it is that there are 2 kinds of travel: to see family and for other reasons.  When we travel to see family, we usually stay at a house with someone we know. I travel with a gluten-free box - it contains some important spices, a gluten-free pan or two, a good knife, small cutting board. Since you don't use this stuff too often, the stuff can be cheap - Walmart or the Dollar store. I eat on paper plates or bowls and eat very simply. The travel for "other reasons" is much harder. This is travel due to work, fun, funerals, weddings etc. At least in our case, we end of staying in hotels.  At a minimum, get a place with a small fridge and microwave. Better yet, get a place with a full kitchen.

Good luck!

[jasmine24]

Thank you so much for the travel advice! I'll check out that thread.

[cyclinglady]

Jasmine,

I kind of got side tracked.  Most likely from travel on my brain.  I just returned from visiting with family.  Drove our RV packed with gluten-free food.  Stayed at my Aunt's house.  I just went into my RV and prepared my own food.  I love my RV!  I also went alone....so I just took care of me.  Hubby and daughter stayed home.  What a treat.  

Anyway, a simple diet of Whole Foods is probably easier (no labels to read), in the beginning.  If your gut symptoms are severe, think about using your crockpot.  Well-cooked stews, soups, etc. are easier to digest.  Save processed gluten-free junk food for when you are feeling better.  Often they contain other ingredients that just do not digest well.  

House?  We have two gluten-free eaters and one not.  So, while you can live in a shared household, it is so nice to come home to a safe place and relax.  We just send our kid to school for gluten and she dines out at other times to get her gluten fix.  Our RV, cars and home are gluten free.  Family and friends are very supportive -- even my Girl Scout Troop!  

I always pack a small cooler that collapses when traveling via air or buy a cheap one when we arrive.  We eat at grocery stores and pack a few items to help us cook at family homes or hotels.  Traveling by car is even easier.  We do eat out using the Find Me gluten-free app and look at reviews written by celiacs.  We use celiac restaurant cards when traveling out of the country.  

It is nice to know that you are not crazy and that there is a reason why you are sick.  Soon you will feel well!  

Take care!  

[jasmine24]

Thank you so much! Using the crock pot is a great idea--I have one that I've barely ever used so now is a good time to start! I've been trying to stick with mostly whole foods but I've been STARVING since going gluten-free so I'm trying to find ways to bring whole food snacks to work too.

After thinking about it over the weekend, my hubby and I are just going to make our house gluten free. He'll still eat gluten at lunch at work and when other times when hes not at home, but I agree that it will be very nice to have one place where I don't have to worry about it. Also, I had a bone density scan earlier last week that shows osteopenia--I'm only 24 -- so I'm going to be as serious about everything as I can to hopefully avoid complications down the road.

[cyclinglady]

Ah, the good news is that you can recover from osteopenia at your age (I am old...already have had fractures, but have been holding steady).  Do weight bearing exercise and eat well to build up before you get pregnant.  

You should not be hungry.  Eat!  Eat fat!  It will satiate you.  Guess what?  My skin is no longer dry.  No cracked heels.  All those years of everyone eating low fat.  My cholesterol is perfect!  Eating fat means adding olive oil to your salads, using lots of butter and cream if you are not lactose intolerant.  If you are, it might be just temporary (like me), so add in whole yogurt and and cheeses which contain the least amount  of lactose.   I even add heavy cream to my yogurt.  Do not skim fat off soups etc. -- eat it!  That is what my Grandparents did!  Eat nuts, fruit, veggies, eggs, meat, fish, etc.  Gee, I even add coconut oil to my coffee!  

 Keep food with you at all times (like a Lara bar, applesauce, peanut butter).  Buy a mini cooler and take perishables with you.  

Having celiac disease means you need to plan.  We do eat processed gluten-free food as a treat or in a pinch.  (Yeah...I bought some potato chips at a truck stop even though I had an RV full of good gluten-free choices of food.).  Alas, I am diabetic too, but while I will cheat on my diabetic diet, I never cheat on my gluten-free diet.  I bake and freeze gluten-free goodies for my family.  My kid even prefers gluten-free homemade cake over bakery cake.  

You get this down!  

 

[jasmine24]

Thank you so much for all the tips! I really appreciate it