Just Diagnosed- 33 year old female

[christasky]

Hello all- 

I was just diagnosed with celiac on Thursday, and I was quite shocked at the diagnosis. I had my gallbladder out in 2008 and was having some issues after the surgery, such as persistent diarrhea, stomach cramps, migraine headaches, etc. At first I did research and "self-diagnosed" myself as just having issues from the surgery, that my body doesn't absorb fat the way it used to, so anytime I ate heavy I'd have digestive issues. 

After several years, however, I started getting progressively worse. I had daily stomach aches, persistent diarrhea and cramps, and headaches that I assumed were just seasonal allergies; when they became migraines I'd have to go to the ER for a shot. It wasn't until this past year that I started getting very sick after eating certain things. The first time was Pizza Hut. The 2nd time was a grilled cheese and the 3rd time was boneless breaded chicken wings with teriyaki flavoring. Each time, I'd be sick for over a week with horrible daily headaches/migraines, flu and stomach bug-like symptoms, and I thought maybe something worse was going on. I went to the doctor and was diagnosed with IBS in October. However, the IBS meds did not do a thing for me, so the doctor scheduled a colonoscopy to rule out Crohn's and colitis, and also ordered a celiac panel blood test. 

The day after my colonoscopy, I went and did my blood work, thinking it was probably a waste of time, and assuming that although they didn't see any obvious signs of colitis that the biopsies would reveal microscopic colitis. I got an email from my doctor the day after, saying to come in and discuss my symptoms. I figured they'd want to do an ultrasound to see if there was a rogue gallstone floating around in a bile duct or something, but was floored when she told me I had celiac. 

Ever since Thursday I've been very bitter about my diagnosis and glad I found this group, because I could seriously use the support. I've been gluten-free ever since Thursday when I got the news, and this morning when I woke up I was amazed that I didn't have a headache and my stomach wasn't making noises. I'm still having the diarrhea and 4-5 bowel movements a day, but the results I've had so far are simply amazing, but I just can't help but be in a stage of self-pity for having to give up my favorite things. 

If anyone has any good advice or ways to help overcome what I'm calling the grieving stage, I'd surely appreciate it. Thank you for reading! 

[squirmingitch]

Welcome to the club you never wanted to be a part of. {{{{{{{{{{{{{{{{{Christasky}}}}}}}}}}}}}}}}}}}

Ok, it's normal to mourn, be somewhat depressed & have a few pity parties. Also normal to let loose a good cry in the grocery store 1 or 2 times. It's part of the grieving process. We've all been there.

I PROMISE IT WILL GET BETTER!!!! There is a period of adjustment but you WILL adjust. 

Go to the Coping section & read the Newbie 101 & follow the links contained in the threads. This will help you a great deal with keeping you safe from cross contamination & also as to what to expect. 

THERE REALLY ARE GLUTEN FREE SUBSTITUTES FOR ALL YOUR FAVORITE GLUTEN FOODS.

It takes time to heal. We didn't get sick overnight & therefore we won't heal overnight. For the 1st 6 months (possibly a year) it can be like a roller coaster with symptoms. Also, in the 1st month or 2, you may experience gluten withdrawal -- yes, it's real & it can make you all wonked out.

We are here for you. We'll cry & moan along with you & we'll celebrate with you too when you get to that stage.

Has your doc said anything about a GI referral? Most times they want to do an endoscopy & take biopsies. You will need to continue eating gluten for that. VERY IMPORTANT - otherwise the biopsies will turn up false negative & the GI will say you don't have celiac. Then you're in a BIG MESS. So please check on that before you remain gluten free.

[krosmon]

1 hour ago, christasky said:

Hello all- 

I was just diagnosed with celiac on Thursday, and I was quite shocked at the diagnosis. I had my gallbladder out in 2008 and was having some issues after the surgery, such as persistent diarrhea, stomach cramps, migraine headaches, etc. At first I did research and "self-diagnosed" myself as just having issues from the surgery, that my body doesn't absorb fat the way it used to, so anytime I ate heavy I'd have digestive issues. 

After several years, however, I started getting progressively worse. I had daily stomach aches, persistent diarrhea and cramps, and headaches that I assumed were just seasonal allergies; when they became migraines I'd have to go to the ER for a shot. It wasn't until this past year that I started getting very sick after eating certain things. The first time was Pizza Hut. The 2nd time was a grilled cheese and the 3rd time was boneless breaded chicken wings with teriyaki flavoring. Each time, I'd be sick for over a week with horrible daily headaches/migraines, flu and stomach bug-like symptoms, and I thought maybe something worse was going on. I went to the doctor and was diagnosed with IBS in October. However, the IBS meds did not do a thing for me, so the doctor scheduled a colonoscopy to rule out Crohn's and colitis, and also ordered a celiac panel blood test. 

The day after my colonoscopy, I went and did my blood work, thinking it was probably a waste of time, and assuming that although they didn't see any obvious signs of colitis that the biopsies would reveal microscopic colitis. I got an email from my doctor the day after, saying to come in and discuss my symptoms. I figured they'd want to do an ultrasound to see if there was a rogue gallstone floating around in a bile duct or something, but was floored when she told me I had celiac. 

Ever since Thursday I've been very bitter about my diagnosis and glad I found this group, because I could seriously use the support. I've been gluten-free ever since Thursday when I got the news, and this morning when I woke up I was amazed that I didn't have a headache and my stomach wasn't making noises. I'm still having the diarrhea and 4-5 bowel movements a day, but the results I've had so far are simply amazing, but I just can't help but be in a stage of self-pity for having to give up my favorite things. 

If anyone has any good advice or ways to help overcome what I'm calling the grieving stage, I'd surely appreciate it. Thank you for reading! 

Just keep looking on line for alternatives.  I just found out I have celiac about 3 months ago - I have always been a big bread eater, but like you, I kept getting sicker and sicker.  Now I cannot tolerate gluten, soy, xanthan gum (put in gluten free flour to help it stay together), tocopherols (Vitamin E).   Most markets have a gluten free section somewhere, usually in the frozen food section.  I found one baker, Against All Grain, that makes very yummy rolls.  Trader Joes has good breads - I can't eat them as they contain xanthan gum -but there are cereals, frozen dinners, etc.   It will take some time to get the gluten out of your system, and until you do, you may not always feel good, but when you do, you'll feel fantastic.  Already my blood sugar numbers have dropped below 100, pains in my body have subsided and even though I am obese, so much of the fat was actually caused by my body's allergic reaction to gluten and soy.   Just keep digging.  Lots of cookbooks and ideas.  And you'll find lots of support here.

 

[christasky]

24 minutes ago, squirmingitch said:

Welcome to the club you never wanted to be a part of. {{{{{{{{{{{{{{{{{Christasky}}}}}}}}}}}}}}}}}}}

Ok, it's normal to mourn, be somewhat depressed & have a few pity parties. Also normal to let loose a good cry in the grocery store 1 or 2 times. It's part of the grieving process. We've all been there.

I PROMISE IT WILL GET BETTER!!!! There is a period of adjustment but you WILL adjust. 

Go to the Coping section & read the Newbie 101 & follow the links contained in the threads. This will help you a great deal with keeping you safe from cross contamination & also as to what to expect. 

THERE REALLY ARE GLUTEN FREE SUBSTITUTES FOR ALL YOUR FAVORITE GLUTEN FOODS.

It takes time to heal. We didn't get sick overnight & therefore we won't heal overnight. For the 1st 6 months (possibly a year) it can be like a roller coaster with symptoms. Also, in the 1st month or 2, you may experience gluten withdrawal -- yes, it's real & it can make you all wonked out.

We are here for you. We'll cry & moan along with you & we'll celebrate with you too when you get to that stage.

Has your doc said anything about a GI referral? Most times they want to do an endoscopy & take biopsies. You will need to continue eating gluten for that. VERY IMPORTANT - otherwise the biopsies will turn up false negative & the GI will say you don't have celiac. Then you're in a BIG MESS. So please check on that before you remain gluten free.

Thank you! The doctor in question is a GI doctor, and has not mentioned an endo. She is having me do the fodmap diet to help me heal along with the gluten-free diet. I have a follow-up with her in a few weeks to see my progress and talk a little more in-depth. I had an endoscopy about a year after my gallbladder surgery, and they said there was quite a bit of irritation but they did not mention any biopsies. This was a different GI doctor than I have right now. 

I had some biopsies done on Monday during my colonoscopy but I know the villi damage is in the small intestine. Should I be worried that she doesn't want to do an endo? 

I've been doing a ton of research on celiac and have gotten a lot of good information, so I'm definitely prepared. I'm just bummed, and need to make sure I stock up and have lots of good things for cooking, baking, etc. since it's a hobby of mine. 

Thanks again for the support! 

[squirmingitch]

28 minutes ago, christasky said:

Thank you! The doctor in question is a GI doctor, and has not mentioned an endo. She is having me do the fodmap diet to help me heal along with the gluten-free diet. I have a follow-up with her in a few weeks to see my progress and talk a little more in-depth. I had an endoscopy about a year after my gallbladder surgery, and they said there was quite a bit of irritation but they did not mention any biopsies. This was a different GI doctor than I have right now. 

I had some biopsies done on Monday during my colonoscopy but I know the villi damage is in the small intestine. Should I be worried that she doesn't want to do an endo? 

I've been doing a ton of research on celiac and have gotten a lot of good information, so I'm definitely prepared. I'm just bummed, and need to make sure I stock up and have lots of good things for cooking, baking, etc. since it's a hobby of mine. 

Thanks again for the support! 

If the GI doc is satisfied with the blood panel alone then that's wonderful. If she DOES want to do a endoscopy then you will have to go back to eating gluten for at least 2 weeks prior. Warning --- many celiacs have MUCH stronger reactions to gluten AFTER they have gone gluten-free & then they have to eat it again for something like a endo biopsy & often they can not do it -- makes them too sick. I would say to call her office & MAKE SURE she's not going to want to do the biopsies then you can go full gluten free without worries. Just cya you know?

There are 2 volumes of a gluten-free cookbook that I highly recommend!!!!! They are "How Can It Be Gluten Free" by America's Test Kitchen. Gotta tell you those folks are amazing! I swear if you make their recipes just like they direct you to; you won't even know it's gluten-free -- nor will your gluten eating friends & relatives.  Just don't make the loaf bread which calls for oat flour (in Vol. 1) for a full year. You'll see that referenced in the Newbie 101. No oats for a year. Then you can try them. What I did was make the dinner rolls -- tweaked them by adding 1/4 tsp. baking soda & 1/4 tsp. of baking powder to the recipe. Then I made them in these:

Open Original Shared Link

Turns out to be fabulous sandwich buns!!!!

When it comes time for gluten-free bread loaves get these:

Open Original Shared Link

gluten-free bread requires the support & these are nice & high to give the needed support. 

King Arthur sells them under their own name but they are USA pans & can sometimes be found elsewhere cheaper. The best pans you've ever used guaranteed!

 

ALSO --- VERY IMPORTANT:

All your 1st degree relatives should be tested every 2 years even if they don;t have symptoms. If they do present with symptoms; then they need to be tested right away. They need to be eating a regular gluten diet for testing.

[canadianjem]

I totally sympathize with how your feeling.  I just about had a break down over a donut!!

I also love to bake. Some of the best cookie and brownies I have ever had are gluten free!!!!

I was diagnosed last February and it is for sure a learning curve. The worst thing for me was traveling.  I had to learn to pack lunches for myself or Pre plan where I was going to eat.

 

[JDarfus]

I know someone already said this, but I agree wholeheartedly: it's normal to mourn!  Allow yourself those times, and they will come, sometimes frequently.  This isn't something you asked or planned for, it's going to take some time to adjust.  

That being said, there are some great gluten-free things out there.  It seems as if grocery stores are expanding their gluten-free sections, which is great.  If you have an Aldi nearby, they have a nice selection of gluten-free items.

One thing that has been a huge help for me is finding an all purpose gluten-free flour that is cup for cup substitute.  There are several great brands available.  My personal favorite is Domata.  I used to be able to find it at our Wal Mart but ours no longer carries it.  But it was still available to order at Walmart.com.  

Hang in there!  I hope you continue to feel better and better.

[gilligan]

Give yourself some time to learn 1) about the gluten free life and 2) time to heal.  I was discouraged at the beginning because I just didn't seem to be getting better and I didn't have any symptoms at all until 6 mos. before I was diagnosed.  It took me two years to feel better, but now I feel great.  Read and study all you can from knowledgeable sites like this one, and be cautious of many personal websites and blogs that are full of misinformation.  If ever in doubt, you can probably find your answer here.  My advice is to eat clean until you really feel better - the FodMap Diet is an excellent choice IMO - my gi highly recommended it.  You have some trial and error ahead of you, but once you get the basics behind you, and you're feeling better, it will become second nature.  

[christasky]

Fodmap is really helping right now. For 2 days straight now I woke up with very mild symptoms and no headache. It's wonderful. 

My mother has similar symptoms but she says it's "not a big deal" since her symptoms are mild. If you knew my mother, she is as stubborn as can be. I doubt she would get tested unless she had worse symptoms. Hopefully she agrees to it, because I'm wondering if she has it. 

Thanks to everyone for the support and helpful information. It's really overwhelming at first, but I'm getting the hang of it already.

[squirmingitch]

I know you're going to have a rough road ahead of you with your mom but do your best. There are celiacs who are termed "silent" celiacs --- they have zero symptoms. We've had several on this site. 1 whose sister was dx'd b/c of terrible symptoms -- our gal had zero symptoms but got tested as is advised & she actually turned out to have totally flattened villi! So she was much worse off than her sister. I've never found any info. on why silent celiacs have no symptoms -- it's hard to believe yet it's very true.

Here is a list of celiac symptoms

Open Original Shared Link

Maybe you could convince your mom by making print outs of certain medical papers & having her read them. Like this one:

Open Original Shared Link

I'm thrilled that you're feeling so much better already! Just remember if you suddenly get yucky -- that's par for the course in the beginning as long as you're sure you're not getting any cc (cross contamination). Whatever you do don't try eating out yet. That's always like playing Russian Roulette. 

[frieze]

your gallbladder issues may well have been related....

[Irene Joanne]

Gall bladder issues can be very related to celiac., I'm in a tough stage right now too- just found out I have celiac about six weeks ago. Please do make sure you don't have to eat gluten again for a biopsy. I got way sicker from gluten when I accidentally had some a month into the diet.  For me right now one of the biggest frustrations is cross contamination in my tiny kitchen that I share with my husband and two adult children that do not eat gluten free. I'm finding reading labels very overwhelming and when I try google to find out if a food item is safe- I usually get an answer based in USA. I live in Canada and have already gotten really sick from something that was gluten free in USA and yet not Canada. 

I know I  feel better if I avoid most gluten free packaged food for now. I've had a few gluten free cereals that made me really sick- I believe I'm having reactions to other foods as well?

[christasky]

My mom actually had gallbladder issues too. I'll keep on her and hopefully she will do the testing. 

I think right now since I'm less than a week into my diagnosis is just being angry. Angry every time I realize what I cannot eat, angry when I see my husband grab whatever he wants to eat. Today my coworkers invited me to lunch to celebrate another coworker's birthday, but I cannot go because there's no gluten-free menu where they're going. I am doing well with avoiding gluten because of how it's made me feel so far. I want to keep feeling good. I'll also email my doctor and ask her about an endoscopy, just to be safe. 

Thanks again everyone! 

[Newly Diagnosed]

I was just diagnosed too!  I have been gluten free for 12 days.  On day 3 I attended a birthday party for my niece and the only food I could eat was an orange!  Luckily I did eat before I went.  I think we just have to get used to dealing with food in a new way.  I didn't feel sick eating gluten so it was a big pill to swallow but I don't want to shorten my life just to eat a gluten filled cookie...  I have been going through ups and downs but trying to focus on the positive, I am diagnosed before I having experienced major health problems as a result of eating gluten.