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Scared And Sad And...relieved

CDeeR

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CDeeR Newbie
CDeeR
Posted

After battling hives (possible DH) since mid-August, daily and most days head to toe!!! Very itchy, I was miserable! After going to my family docter three times, my dermatologist two times, and an allergist three times-I finally was sent to a GI specialist, they did a blood panel with showed wheat and gluten intollerance, then ordered an upper endoscopy with biopsy of my upper small intestines. The biopsy was Friday, found out yesterday that it is in fact Celiac disease. Which explains the hives, and might just explain my fertility issues, I've had six miscarriages-never carried a pregnancy to term.

Scared-because I had an xray today of my small intestines, so all sorts of thoughts are going through my head, "how long have I had this?!" and "what have I done to myself?!" and God forbid "what if they find something on the xrays?!!!!"

Sad-because I already miss my mom's oatmeal cake, my dad's fresh baked bread, and the cookies that me and my daughter (she is adopted) make together that taste soooo good!!! I'm also sad because my husband, daughter, and I love to eat out! Well how do I know what restaraunt to trust, when they say "gluten free"-is it honest, how fearful should I bee of cross-contamination?!

Relieved-because I am hoping my hives leave me soon! The doctor said it would take more than a couple of days, perhaps a couple of weeks, maybe even longer!!!! There is also a small part of this 38 year old woman that sees the silver lining to all of this, that being, what if...what if I can have a baby once I am gluten free?!

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TrillumHunter Enthusiast
TrillumHunter
Posted

It will be okay. You can do this! There will be great things to come out of it, and new challenges to face. This board is a great resource!

Best advice I ever got? Eat very simply the next few MONTHS to allow your insides to heal. Eat single ingredient, home-cooked meals that you can assure are gluten-free. Avoid rushing out to buy every gluten-free replacement out there. Some are best saved for when you are feeling better.

Come back often!

GottaSki Mentor
GottaSki
Posted

Great advise...keep it simple at first. Once you are comfortable with gluten-free you will be able to adapt almost all your favorites by substituting ingredients. For us baked goods -- cookies and cakes have translated well, but with bread you really need a good gluten-free recipe.

Welcome and be sure to ask anything and everything that is confusing during the transition...that is the nice thing about this forum...answers come very quickly.

Good Luck and happy healing to you!

LDJofDenver Apprentice
LDJofDenver
Posted

Welcome and congratulations on being one of the lucky ones that actually got a diagnosis. I had all the feelings you had - most of all, I FINALLY knew what the heck was wrong with me!

The good news is you'll find gluten-free substitutes for pretty much everything, but it will be a bit of a learning curve for the first couple months.

Be aware that

buffettbride Enthusiast
buffettbride
Posted

I think it's perfectly fine and normal to miss the days of gluten gone, but it has to be some relief to your own conscience that you are not a crazy person and there really is a cause for all of the yuck you have been feeling.

esammarie Newbie
esammarie
Posted

Welcome to this scary yet comforting and healing place called "I have celiac disease!" I was diagnosed only a month ago and I have found this site ENORMOUSLY helpful and comforting. I am not experienced enough, I don't think, to offer much advice except to say that I felt that feeling of sadness, of anger, of hopelessness. It seemed so enormous - ALL those things I'll never eat again! It felt overwhelming.

But then I read and read and got great advice here and I found that there are all kinds of things that are safe and yummy for us to eat and I felt better! I won't be Pollyanna and say it's easy; it's not. But it is SO worth it and after a while I know this will feel like second nature and I won't be afraid to go to group meetings or out to dinner and I will be proud of the wonderful foods I introduce people to. That will be GREAT!!!

I have DH, too. That's how this started. And I had "female" problems. After the last miscarriage four years ago I said I just wasn't meant to be a mom. But then I read on this site and on many other sites that celiac disease definitely is a factor! And it makes sense, if you aren't nourished, if you body is missing all the nutrition it should be getting because the GI system can't absorb them, if your body is producing antibodies against itself, well, then it makes sense that a baby can't grow under those circumstances. Again, others are more knowledgeable than me and I hope I haven't said too much.

I just want you to know there are great people here and they are right - you CAN do this and you will be GLAD you did when you feel better than you've ever felt before! A hug for you for couragel

CDeeR Newbie
CDeeR
Posted
  • Author

Thank you all for your supportive, kind words and advice-God knows I need it! I appreciate all of you, truly I do! I'll be biting my nails until they call me with the results from my xray, which btw-do any of you know if the stuff they make you drink (thick, nasty, white, kaopectate-chalk-like stuff) contains wheat and/or gluten, because I am literally COVERED with hives today! I had next to zero hives yesterday and I woke up today and the are everywhere! Just curious about that, not much I could have done about it, seeing as how they needed that inside me as contrast-but still!

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DebNC84 Apprentice
DebNC84
Posted

Your battle sounds so similar to my story!! You will be fine! Those things that you miss are insignificant because your health and well being are at stake! We all know how it is. The longer you are gluten free the more that you will realize what that toxic crap was doing to your body. My rash stopped itching within three days.... and slowly the rashy bumps went away and healed up - the scars even fade over time. Look up the effects of iodine in your system and DH (dermatitus herpetiformis) I don't want to give any bad advice but i Know what worked for me... :)

Hang in there.. You can do this!

DebNC84 Apprentice
DebNC84
Posted
Thank you all for your supportive, kind words and advice-God knows I need it! I appreciate all of you, truly I do! I'll be biting my nails until they call me with the results from my xray, which btw-do any of you know if the stuff they make you drink (thick, nasty, white, kaopectate-chalk-like stuff) contains wheat and/or gluten, because I am literally COVERED with hives today! I had next to zero hives yesterday and I woke up today and the are everywhere! Just curious about that, not much I could have done about it, seeing as how they needed that inside me as contrast-but still!

I CAN'T BELIEVE IT! *shakes head* I don't think i would have allowed them to use that stuff. But obviously it was necessary or your doc wouldn't have used it. That rash should calm down - the longer you are gluten free the less effects you should have from accidental "glutenings" Hopefully none.. but if you are like the rest of us.. it'll happen. The proteins from the gluten stay in your system for up to 2 years.. that's what creates the DH that and Iodine - Iodine reacts with the gluten in your system and causes the rash. I KNOW what you are going through.. I wouldn't wish it on my worst enemy!! It's pure torture!

Cutting back on Iodine at least for a little while will help - NO SEA SALT! I know that iodine is necessary for thyroid function but... you just look it up, ask your doc and decide what to do. I am using non-iodized salt - and my Thyroid levels are better than they were before i was gluten-free - :) Hope this helps.. at least knowing someone else shares your pain.

I hope all is well with the x-ray results - stay calm - all will be fine.. probably anything they find will fix itself with your new gluten-free lifestyle - our bodies have amazing healing capabilities - God made us that way!

CDeeR Newbie
CDeeR
Posted
  • Author
Your battle sounds so similar to my story!! You will be fine! Those things that you miss are insignificant because your health and well being are at stake! We all know how it is. The longer you are gluten free the more that you will realize what that toxic crap was doing to your body. My rash stopped itching within three days.... and slowly the rashy bumps went away and healed up - the scars even fade over time. Look up the effects of iodine in your system and DH (dermatitus herpetiformis) I don't want to give any bad advice but i Know what worked for me... :)

Hang in there.. You can do this!

Thanks DebNC84! BTW friends-my small bowel series xray taken Tuesday came back normal, no damage, thank God! Also, I am beyond thrilled that less than 15 miles from my home is a gluten free bakery! She bakes during the week, freezes your order and pick up day is Friday, she does not ship that I know of. If you are ever in Indy, look her up, here is her site. I can not wait to try her stuff. She started doing this because of her child having food allergies and her child's friend has Celiac and they noticed that there just was not a lot of choices out there for good wheat and gluten free food. So she started this business, I'll let you know how everything tastes. Here is her site www.gratefullygf.com

DebNC84 Apprentice
DebNC84
Posted

Thanks DebNC84! BTW friends-my small bowel series xray taken Tuesday came back normal, no damage, thank God!

that is AWESOME news! I had a scope biopsy done 1 year after i went gluten-free - and all was normal.. it's a relief since I had been pouring gluten into my gut for 44 years! That's a great find with the lady who does baked goods. That will be a big help for you. I would follow other advice from fellow celiac disease friends on this forum and stay eating very plain for awhile... it will help you. I didn't know a thing when i went gluten-free - just went cold turkey and was scared to eat! :) now i take too many chances and get glutened too frequently - need to get back to being paranoid i think. I felt better.

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      Thank you so much @knitty kitty! My feet aren’t dry or ashy and I don’t have a rash that gets scaly. It’s like very itchy/burning vesicles that are symmetrical - on both arms, both legs, etc. They actually feel better in direct sunlight as long as it isn’t really hot or I’m not exercising outside, but gets worse if I sweat (especially if the area is covered up). It’s not usually on the outside of my elbows and knees which seems more typical of dermatitis herpetiformis (unless it spreads there). It tends to first hit the inside of those areas. Interestingly, twice the rash broke out soon after eating an unhealthy meal and having an alcoholic drink (I only drink a few times a year, no more alcohol content than a glass of wine).  So I wonder if there is a connection. I’m halfway considering doing a gluten challenge for a few months to see what happens, knowing I can stop if I have any symptoms, and asking for a full celiac disease panel at the end. I really appreciate your thoughts! 
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