My Journey..where To Go From Here..

[AshBil]

Hey guys! So I really didn't know which section to post this on so I hope this isn't an awkward spot for it haha. I just wanted to kind of put my story out there. Granted mine is a lot shorter than a lot of yours all out there. I'm just having a little difficulty adjusting to this gluten free diet. I guess I'll start at the beginning...

At the end of June this year, I started getting this dull yet sharp pain in my lower right abdomen. It would come and go but it was always there, if that makes any sense at all. It wasn't too bad of a pain but I was a little worried about it. There wasn't a pain killer I could take that would stop it at all. I then started noticing that my stomach felt very bloated like it was going to burst and pop off. I really noticed on the fourth of July. My aunt had a cookout and I was playing Badminton with my cousins and my boyfriend a few hours after we ate and I couldn't run. My stomach felt alomost like I was pregnant. I couldn't suck it in or anything. It was so hard and protruding. All summer, I could barely wear any shorts with buttons. The scale said I wasn't gaining any weight but I could barely fit in my shorts. I lived in summer dresses and sweatpants type shorts. I went to the ER on the 5th of July because the pain was getting worse and because of it's position, I was relly afraid it could be appendicitis. Which it wasn't. Then I started getting really bad chest pains. My heart would go insane and I'd get so sick I couldn't even look at food all day. I was so faint and kept losing feeling in my right hand/arm and foot. I was nervous of a heart attack on that one. I've had two episodes like that and they were absolutely terrifying. Went to the ER for that one too a few times. I've been in and out of my local ER over this past summer literally 9 times. They started to write me off and tell me to just go home and there was nothing esle they could test. My GP couldn't find anything and didn't know where else to go. I was crying myself to sleep every night, terrified that something was going so wrong in my body that no one could find.

And then one afternoon, I went #2 and I noticed there was fresh bright red blood on my stool. I instantly cried. i couldn't help but think the worse. All summer I was dying in pain every night and it was intensifying everyday and my stool habits and even the look of it was changing. It stressed me out so much and was so overwhelming, I only thought the worse. I went back to the ER. They found no blood after a rectal exam but that night was actually the beginning of my answer. The ER doctor told me that I should see a Gastrologist so he referred me to one and i made an appointment for that Monday. When I saw him, he gave me some antacids and hysocamine and told me to take miralax because i was starting to be constipated. The pills did nothing for me so I stopped taking them. But he also scheduled me for an endoscopy.That was performed while I was sedated and they gave me a paper saying that they biopsied my duodenum for celiac becasue there were signs of it. I never thought of that one. A very close friend of my mom's has it. My mom didn't have it but she has DH when i was around 7 years old and went away and never came back after going gluten free for a short time. But after that, his office called and scheduled me to get the celiac panel bloodwork done. So I went along and did that and I also had to do a IDA scan to make sure nothing was going on there. That one came back totally fine.

So just last Monday October 15th, it was my follow up appointment from the endoscopy and blood test. He first told me that my blood test was very interesting to him. He said that out of the 4 things they test for in your blood, only one came back positive and that one is one that they don't rely on the most to diagnose someone. The other 3 were negative. But the biopsy showed signs of it. He thinks I'm just in the beginning stages of it to where it doesn't show up as strong in my blood. He then told me to go on the gluten free diet and I have another appointment with him at the end of January so he can check up with me and see if it's helped. But after almost 4 months of being in so much pain and being so nauseous every single day, i was almost happy to hear that I have it. But I'm kind of still unsure to believe if I really have it or not just because he didn't really say much about it. If he had said "your blood work was like this but from your biopsy I strongly believe this is what it is" then yeah, I'd believe it but i feel like I kind of got a wishy washy answer. But the logical part of me knows I shouldn't really read into that.

So...here I am, newly diagnosed at the ripe age of 20! I really don't know what to do from here. I bought a bunch of things that were labeled gluten free in the special gluten free aisles in the supermarkets like the pastas and snacks and stuff. But I mean, that's not really the best thing to do. i know i've got to eat other things but I just don't even kow where to look right now. My doctor gave me a bunch of printouts about it and what to look out for on labels. But there's just so much to look for a decipher that it's a little overwhleming for me. I'm not really sure what to look for except for the whole gluten free label. All I can think about, now that the holidays are coming up soon, how am I going to eat on Thanksgiving? I don't cook the meals. We go to my aunt's house for that and no one's going to do anything special for me. Or even Christmas and Christmas Eve. My grandma always orders pizza on Christmas Eve. i really don't feel cofortable enough to ask my aunt what she used in everything on Thanksgiving (we don't have the best relationship). And my mom cooks a lot of pasta and breads chicken a lot.And now I have to have completely spearate food cooking in a separate pot and it's making things a little frustrating. My mom completely understands since she had to go through this like 13 years ago but she even said that this is going to start getting annoying. My boyfriend is so supportive and is trying his hardest to help me look for things and he's doing research on his own to inform himself on it. He's been there with me thorough this whole thing. He took me to the ER throughout the whole summer all those times (sometimes even at 3am) and to every single doctor appointment. When this all started, we were only together for 4 months so it really was a test on us. Now at 8 months, we're stronger than ever and the fact that we came out of the tunnel together, i love him even more for that.

But anyways...I'm so sorry that this is so rediculously long but I just wanted to put it all out there. I feel like I'm at a big loss. It really looks like it's going to be a lot harder than I first expected. I just need some advise on how to get started and just what to do i the long term. I have an appointment with a dietitian on November 7th so that will help but I need to get by in the meantime. I'm already getting a little overwhelemed by it all tot he point where, out of absolutely nowhere last night while I was watching the presdential debate with my boyfriend I broke out into tears and started crying hysterically. I've just been on edge through this whole thing since June that it doesn't take uch with this topic to set my tears off. Thank you so much for reading this really really long novel! haha. Thanks again everyone! Hope to hear amazing insight from you all! God bless.

[shadowicewolf]

Fun, isn't it when doctors just write ya off.

Funny thing is, i got spooked when i had a similar blood in stool incident. Went to doctor on campus. Hemroids irritated by "D".

At any rate, before my dx i would have the numbness in half of my arm and hand (i could literally draw a line). Oh its just a pinched nerve.

I'd have indigestion so bad that i'd start to hyperventilate and my throat got damaged. Oh, its just a panic attack.

I had "D" for many many years that would come out of nowhere and i'd have to wear a pad when i went out plus take some pepto just in case. Oh its just IBS.

When the "D" got worse, I developed vomiting. Oh its just a bug, stop acting like a child and deal with it.

When my gallbladder would act up before its dx discovery, Oh its just a muscle sprain as there is nothing wrong with your bloodwork.

Then i got a nurse practicioner who had a hunch and ran the blood work just in case. The IGA TTG came back positive with the rest negative. Was told to go gluten free. I did, four weeks later had the biopsy, but that resulted in a negative (Imo, the GI didn't take enough samples and didn't do the right area. He "said" he did the entire small intestine. Uhuh sure). Did the genetic test, came back positive for both genes. I also had a positive reaction to the diet.

We're all different, it would be nice if the medical world would understand that.

I was 21 when i went through all this

[nvsmom]

(((HUGS))) You've been through a lot but I'm glad you've figured it out... things can only improve for you from here on out.

Hang in there.

[AshBil]

Thank you guys! In my bloodwork they did do the genetic test too and it showed that I definitely carry the gene. Yeah, I love how doctors always fall back on the whole "you're just crazy, there's nothing wrong. Do you need to speak to someone?" line. I more than once got asked what I do everyday and how high my stress level is. My response was always that my stress level right now is through the roof when you keep asking me that question everytime. I had everything checked out from the HIDA scan and ultrasounds of my gallbladder, kidneys, bladder, ovaries, liver. I had two CT scans with that yummy barium stuff. Had 2 chest xrays.But they couldn't see anything so I must've been making it all up. Some of my family even started doubting me, going so far as one of my cousins even making fun of how many ER visits I had over on my facebook page. So actually being diagnosed makes me happy so it can kind of be like an I-told-you-so thing to everyone. I'm just grateful that it was found a lot sooner than it typically might've. I know there are people who go years before figuring it out. The 4 months i went through felt like 4 years. My heart goes out to everyone whose had to go through even a fraction of what I had to.

[shadowicewolf]

Eeek you had a bit more done then me.

I was convinced at one point that doctors were vampires

I've had the HIDA, the ultrasounds of every square inch of my abdomen -shiver-, and i somehow avoided a CT (yay?). Though i think the HIDA was the worst. The moment that stuff they inject ya with hit my gallbladder, I was in pain and i wasn't allowed to move. At least they gave me many warm blankets.

I do hate it though when doctors automatically assume its mental. Yes, i'm well aware of what stress and axiety can do to the body. But dangit, thats not the issue.

[Celiac Mindwarp]

Welcome to the forum

Sorry you have to be here, and sorry to hear what you have been through. At least you found this board, these guys are awesome.

It will be overwhelming at first, but it does get easier. I am 7 weeks gluten-free, and had a few meltdowns on the way. I burst into tears in a health food store when I couldn't find anything to eat.

You are about the age I was when I first got symptoms, and I am more than twice that now! At least your doc spotted it and diagnosed.

When I was younger (and even now sometimes) I found it hard to 'make a fuss'. You know in your heart what you need to do. Get all the support you can, boyfriend and Mum sound like good allies. It does get easier the more you do it. I like to remember that the 'it's only a bit of gluten' line is like saying 'it's only a bit of rat poison'. Take your own food for holidays if you need to. Better to feel a bit awkward than be sick

Take it easy on yourself, ask lots of questions.

Many people find simple whole foods easier to start, meat fish veg fruit.

Good luck, let us know how you go

Mw

[ncdave]

First welcome to the forum, you"ve found a wealth of information here. You have a lot of reading and studying ahead of you. Your story sounds all to familer to me. Be very careful with the gluten-free packaged foods, i would not trust them at this point. Eat fresh meat veggies an fruit, shop around the edge of the grocery store, stay out of the isles. You"ll find out why in your reading. You may want to try removing dairy from your diet for a month, thats what it took for my tummy not to feel like it had a basketball in it. It"s nice not to have to wear sweat pants everyday! Use the search function on this forum to check everything. type "gluten free (product you want to check). check everything from deodrant,shampoo,dish soap,washing powder,everything you can imangine has gluten in it. It"s a lot of reading an research and it can get pretty frustrating, feel free to come here an vent. Thats what were here for and there's lots of nice folks more than willing to help along the way.

[1desperateladysaved]

I am sorry you had to go through what you did. I couldn't help being a little glad that you had that pain. Too bad it was misinterpreted and you were made to feel crazy. However, now it is found out and you don't have to live with it, you can recover.

Ha. I think I would like to see a thread on wearing dresses! It sure is easier than waist huggers for bloating bellies! I happen to like dresses, but my belly is one reason why I do.

Diana

[SMDBill]

I really can feel your pain and as I read your post I couldn't help but think of how much your situation mirrored mine, particularly your symptoms. It started to be noticeable with the pain and bloating, feeling like I couldn't possibly stretch internally any further. From the outside I looked normal, but my insides were telling me otherwise. The stool issue is another clue to it all.

It's wonderful that you were tested and your specialist is leaning toward celiac as your diagnosis. But, diagnosed correctly or not, your diet will tell the real story. If you stick to being gluten-free and adjust how you live, as well as how those around you live - how they prepare meals, how they choose where to eat, etc. - you may find relief faster than you imagine. Mine took only 2 days to feel better than I have felt since I was in my 20s. I'm now 43 and have been gluten-free for 6 weeks. In 2 days I felt like a new person...that's the biggest clue to the problem. Like you, no pain medication, antacid or other product could touch it. Headaches daily, sinus drainage constantly, skin issues, fatigue, oily stools, extremes from D to C. It was awful and it sounds like your situation is as well.

Since I just found out I had it, my first fear was holiday meals. I was so self conscious and afraid to question anyone's meal preparation outside my home. We have a wonderful family dinner at every holiday and many are at my in-laws' house. My MIL is an awesome cook and I just didn't want to be part of anything that would make her change those meals we have been enjoying all these years. However, my health had to come first so we talked it out. She was so open and caring and agreed to make sure she used gluten-free flours to make gravy, gluten-free broths, a special dish for me because I can no longer have dressing or rolls, gluten-free dessert. We had planned to have a trial run dinner in advance and I'm not sure if we'll get to or not, but it was so great of her to offer. Maybe you'll have similar concern in your family because our loved ones really do care enough to keep us safe. It's hard, especially for them because they don't know all the things we worry about with cross contamination, from something as small as using the same utensil in 2 cooking dishes that could carry gluten from an unsafe food to what should be a safe one. Dish washing is another concern, as is keeping flour out of the air and off of our foods. Countertops, cutting boards, knives...they're all scary to us but non-celiac people would never give them a second thought outside of meat/poultry concerns.

I know you're 20 and don't feel comfortable having to ask questions and speak out, but you really do need to. You can discuss with them your medical condition and explain the things that can harm you. Most likely they will start thinking of that meal they plan to prepare and could start asking questions themselves, leaving you to not feel like the "bad guy" for talking about it. If you're genuine and just present your situation as an awareness thing for them, switching gears into questions about those dinners may be easier than you think. You're not insulting anyone by asking about ingredients or preparation methods...your health depends on it. Nobody will ever take it as seriously as you do so it is important that you adjust a bit and get comfortable asking relatives, friends and restaurant workers about anything that concerns you. It's not fun to explain it over and over to new people, but it's necessary to protect you and give yourself time to heal. Otherwise you'll lay at home in pain, as I have for the last 3 days, due to a contamination or ingredient issue. Once you go through that, which you probably will but I hope for you that you never do, there will be a change of heart and asking won't be difficult if it protects you from days of pain.

Best of luck. And about that food. I started my first week by buying up equivalent foods to what I normally ate. Not only is that extremely expensive, few of them really satisfy those cravings because it's so difficult to match the taste of what you know already. I just eat my gluten-free lunch meats without bread, hamburgers without bun (cut up like meatloaf and dipped in ketchup!!), more fruits, eggs, potatoes, corn, green beans, sweet potatoes and other yummies. I make dinner my best meal of the day and I eat fruits, nuts, candy (need the sugar), jello, fruit cups and pudding during the day. I eat a lot still, but none of it is junk like before. A side benefit is I have lost 11 pounds without being hungry and I'm eating healthier than ever before. I stopped buying those expensive gluten-free foods and just found foods that naturally don't have it. Kix cereal, Rice Chex (many varieties are gluten-free), lunch meats gluten-free (many already are), etc. It's not hard, but it is an adjustment. Take care!

[GFinDC]

Hi Ashbil,

I don't know if you like to cook but it might be a good idea to learn. It is safer to make your own meals so you know what is in the food. Eating simple whole foods is a good way to start the gluten-free diet. You can always add the gluten-free baked goods in later after you have healed a bit. If you do plan to eat at a relative's house for the holidays it would be better if you go there and help with the cooking. It is very easy for someone who is not gluten-free to make a mistake in cooking and contaminate a food with gluten.

Eating whole food instead of processed foods is also easier as you don't have to spend lots of time reading labels. Simple whole food meals are good for you and taste great. Have you had your vitamin and mineral levels checked? Your numbness sensations could be related to a lack of vitamins. Celiac makes it hard to absorb some vitamins, especially the oil soluble ones. That mal-absorption problem should correct itself after you have healed a while, but it may need supplements in the meantime.

Welcome to the gluten-free club and a lifetime of healthy eating!

[Megan-]

Hi,

Sorry to hear about your diagnosis but you're going to be able to get through this. With the holidays approaching, I certainly understand your anxiety. I find it helpful to share gluten-free recipes with my relatives to encourage them to make at least a few dishes safe for me. You should plan on making a filling side, perhaps stuffing, gluten-free, so you can be sure to leave the meal full. You also mentioned pizza on Christmas Eve...I buy frozen Udi's pizza crust and top them with my favorite items and cook them ahead of time. That way when friends and family are eating pizza, I don't feel left out. Best of luck!

[AshBil]

Thanks guys! I bought a bunch of fruit to replace my usual snacks and told my mom that I will cook my own dinner (which she was extremely happy about haha). I was already warned that no one's going to change anything around for me on the holidays coming up so I'm kind of at a loss there. But I also told my aunt that I'm going to make a couple of dishes for Thanksgiving that I could have as well as everyone else that are naturally gluten free. I know it's a little early to plan for Thanksgiving and especially Christmas but I'm definitely the type to plan everything in advance. My bloating and that pain is gone but I can't shake the nausea. It's just always there. I'm not feeling it today but I have every day even since going gluten free and now even while just doing whole foods. Is it normal to take a while to feel completely better because sometimes I'm thinking that maybe it really isn't celiac. Ugh! I just wish my doctor gave me a more confident answer. I can't see him for three more months. I'm all jumbled over here. Maybe it's this hurricane sandy that's coming my way messing with my head lol

[AandGsmomma]

Im new here too. The docs actually told me it was a chronic pain issue and was all in my head and U was prescribed antidepressents. Some docs are horrible.

[AshBil]

AandGsmomma, i know that one! All too well. I know that if someone visits the ER a lot in such a short period of time with nothing being found, they might doubt you a little bit but after a couple times, I had a few doctors in the room with me, staring at me and asking me, "what do you do all day?" "are you in school or do you work?" "what's your daily life like?" "do you feel like you may be depressed?" They were starting to make me think I really was crazy, like I really was just overly anxious and creating stuff in my head. I hate that they do that. Just because you can't find something doesn't mean you make your patient feel horrible. And it only got worse after I started getting every test done. All the CT scans, x-rays, ultrasounds, blood work, stool tests, urine tests, rectal exams, pelvic exams and HIDA scan not finding anything made them question my mental health more. That endoscopy was the only thing that muted those accusations because finally something was seen and there could've been an answer. My gastro is a really good doctor I've heard and he's the only one who has really listened to me. My general doctor just gave me prilosec and then forget the nxt time that she did that and gave me some more again. My gyno just put me on the pill. The ER doctors told me I was crazy 500 times and thought i was pregnant and when I'd tell them that there was no way I could be pregnant, they'd ask me "how do you know" with this LOOK. I'd say because I'm a virgin and they'd give me another look like they didn't believe me at all. I hate that some doctors don't listen to you. It's YOUR body. They really need to listen more and do their job.

[shadowicewolf]

Funny thing about those antidepressents i was 'required' to take. I took one, it made my stress, axiety, and even my issues due to aspergers (!!!!! thats a rarity) act up. Needless to say they got pitched.

[AnnJay]

Hi Ashbil,

I'm a bit new to the Gluten Free life, too. Mine started a few months ago. So this Thanksgiving will also be my first attempt at being grateful and gracious and NOT eat gluten. Fortunately we host and do almost all the cooking so I have control over the menu. The biggest gluten source is bread stuffing. My husband wants to cook a separate turkey or turkey breast for me so he can still stuff the turkey. I want to cook the bird unstuffed so I can eat it. I will also make a rice dressing. Hubby can't give up his bread dressing so that dish will need to be carefully segregated so its serving utensils don't contaminate any other dishes. The only other change I need to make is the pumpkin pie. There are some paleo pumpkin pie recipes out there made with ground nuts as the crust. I'm practicing now so I can have a pumpkin pie that doesn't make me sick for the holiday. Our other sides are mostly vegetables, like mashed potatoes, sweet potatoes, green beans, Brussels sprouts, salad...these are all cooked fresh without processed ingredients added in my kitchen.

Since you have the Celiac Disease dx, it would be useful to notify your family members for 2 reasons: one, there is a genetic component, so other members of your family may face a future dx, and two, to let them know of your dietary restrictions. In my family, my uncle did this. On of our Christmas traditions is to eat ravioli at our family party. Last year he brought a ham and potatoes for himself and to share with everyone. No one had a problem with him doing this, and, considering the gathering includes 25-30 people, it was a respectful way to handle the situation.

You might want to talk with the Thanksgiving cook to find out about side dishes you may be able to eat, and if the bird would be stuffed with bread dressing or not. Then bring your own if you have to, with perhaps a plain sweet potato to cook so there are no gluteny marshmallows served with it. Maybe make your own pie to share.

Meanwhile, start reading about the hidden sources of gluten. I spent all summer avoiding gluten but getting sick from the weirdest things. Put down that margarita! Yep. It contains gluten. Weird, huh? The sweetener dextrose is made from either corn or wheat, same with carmel coloring (like in soft drinks and balsamic vinegar). And there are plenty more weird gluten containing items. Good luck, happy healing!