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Just Diagnosed.


MissMay

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MissMay Newbie

Hello everyone. I have Celiac Disease. There. I said it.

You'll have to forgive my denial, as I was just diagnosed yesterday. 6 long years of suffering and endless testing and it all boils down to (delicious) gluten. I am just thankful for the internet and that I have the means to reach out for support from complete strangers around the globe.

I feel as though I'm in mourning right now. Looking through my fridge, I can find about 3 things that don't contain gluten or lactose (oh, did I mention I'm also lactose intolerant?). My frame of mind is not helping the situation; I keep saying to myself, "Lettuce...that's all I can eat isn't it?" I've spent about 4 hours google-ing and I know there are many options out there for me, but right now I find it all overwhelming (guar gum?). I'm from an Asian family so eating a lot of rice is no new thing for me, but we as a family LOVE to eat....all the time. My husbands family is Ukrainian, also a big fan of eating all the time. Our families don't even get along unless we are sitting at our dinner table drinking beer and dipping our bread into gluten rich sauces.

I'm extremely stubborn and I thought I could beat my lactose intolerance with a positive attitude...well that didn't work. Now, I feel defeated. I'm raising my white flag and starting my gluten free diet today. I actually hit up the local health food store yesterday and dropped 70 dollars on some pasta, a bag of rice chips and salsa (ouch!). I guess I'll be spending a lot more time in my kitchen (good thing I enjoy cooking).

Anyway, I just thought I would introduce myself before I bombard you all with endless questions. Please forgive my negativity at the moment: I have just googled a lot of my favorite foods and I can't believe what I'm finding. I am the only Celiac in my family, but at least I know I'm not alone. For that, I thank you. Off to my gluten free journey!

Miss May


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curlyfries Contributor

Hi Miss May, and welcome!

We've all been where you are and remember the frustration of starting this "journey". Ask away! You will be glad to know that almost anything you want can be made gluten free. And we have a handy dandy search box for celiac.com. :D

Ahorsesoul Enthusiast

Welcome to the gluten free world! You will feel so much better once you are gluten/dairy free. On the upside your lactose intolerance MAY go away once you are gluten free and your intestines heal. Also (on the down side) you may want to avoid soy for a few months while you heal.

It's hard but well worth the trouble. We are here for you to vent.

GottaSki Mentor

Welcome Miss May!

You certainly owe no apologies -- we have all gone thru what you are experiencing. I can't imagine anyone would jump for joy at the opportunity to examine every item that goes in ones mouth.

Rest assured it does become easier and then second nature with time.

Be good to yourself right now and ask away...there are always people here ready and willing to commiserate and/or answer any questions you may have.

Evie4 Apprentice

I found the initial cleaning out of the pantry and fridge was difficult. It

LDJofDenver Apprentice

Welcome to the club. Most of us have a history like that, had it for 10 years or more and misdiagnosed with all kinds of other things. I was being treated for each individual symptom (a pill for this, a pill for that, an ointment for the skin, etc). I feel your pain!

It can be a little overwhelming at first. We

MissMay Newbie

Thank you all for the wonderful encouraging words. You have no idea how much I really do appreciate the understanding. People really take the fact that they can eat anything they want for granted.

Update: Every first friday of the month, my office has a lunch meeting where we have a caterer serve us. I absolutely dread this day. I used to eat the bare minimum (enough to stop the stomach from announcing to the whole office how hungry I actually was), and let everyone in the office think I was anorexic and just didn't eat. I found out yesterday that the lady who caters our luncheons has a daughter who is gluten, corn, lactose and yeast intolerant (yikes!). She made a special meal for me today at lunch: homemade chicken soup, grilled chicken breast, tossed salad with homemade italian dressing and lactose/gluten free chocolate strawberry cake! (I KNOW HEY?) I haven't had lunch on a work day in years, so I was a bit hesitant to do so today....but I did. I finished and listened for the instantaneous gurgling and discomfort...and what do you know? Nothing. Just plain old full and satisfied. I could have cried. The caterer (Janet) is going to be a wonderful resource for me. Also, when I got home my DH had cooked me some delicious veggies, pork chops with pineapple salsa, and an amazing tossed salad with homemade honey mustard dressing for supper. As I sit here typing this right now, I am happily digesting like a normal person.

So, the score now sits at:

Gluten Free Diet: 2, Old Diet: -503943927348372938

Miss May


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Salax Contributor

Miss May, too funny! I am happy for you! Your on the wonderful road of EATING WITH OUT STOMACH PAIN!!! What an awesome thing.

I thought that it was a normal thing to have stomach pain after eating, WRONG! I am so glad that I found out it wasn't all in my head and there really was something wrong....Of course I knew there was.....freaking doctors...anyways Congrats!! :D

We are here for ya!

GottaSki Mentor

What a wonderful day for you Miss May!

Here's wishing you many more. I know we turned a corner somewhere between 1-4 months gluten-free that it actually wasn't a chore at all and our food tasted better -- might be because it wasn't making me as sick?

Cheers & Happy Friday to you!

jkr Apprentice

There is so much information to obtain on this forum it is wonderful. I have found so many great recipes here and on the internet. Thank goodness mainstream stores carry gluten free foods. When I'm at the grocery, I use my iphone and go on this site and I have the app "Is this Gluten Free" to help me choose wisely.

Good luck and happy healing!

Northern Celiac Newbie
Hello everyone. I have Celiac Disease. There. I said it.

You'll have to forgive my denial, as I was just diagnosed yesterday. 6 long years of suffering and endless testing and it all boils down to (delicious) gluten. I am just thankful for the internet and that I have the means to reach out for support from complete strangers around the globe.

I feel as though I'm in mourning right now. Looking through my fridge, I can find about 3 things that don't contain gluten or lactose (oh, did I mention I'm also lactose intolerant?). My frame of mind is not helping the situation; I keep saying to myself, "Lettuce...that's all I can eat isn't it?" I've spent about 4 hours google-ing and I know there are many options out there for me, but right now I find it all overwhelming (guar gum?). I'm from an Asian family so eating a lot of rice is no new thing for me, but we as a family LOVE to eat....all the time. My husbands family is Ukrainian, also a big fan of eating all the time. Our families don't even get along unless we are sitting at our dinner table drinking beer and dipping our bread into gluten rich sauces.

I'm extremely stubborn and I thought I could beat my lactose intolerance with a positive attitude...well that didn't work. Now, I feel defeated. I'm raising my white flag and starting my gluten free diet today. I actually hit up the local health food store yesterday and dropped 70 dollars on some pasta, a bag of rice chips and salsa (ouch!). I guess I'll be spending a lot more time in my kitchen (good thing I enjoy cooking).

Anyway, I just thought I would introduce myself before I bombard you all with endless questions. Please forgive my negativity at the moment: I have just googled a lot of my favorite foods and I can't believe what I'm finding. I am the only Celiac in my family, but at least I know I'm not alone. For that, I thank you. Off to my gluten free journey!

Miss May

Hi, miss may,

hey you can't give up that easy. One door has closed but another one has opened. I was diagnosed in April this year with celiac. I am also lactose intolerant. But if you look there's lots of food out there to eat. for asian foods the big thing is most vh sauces aqre gluten free,plus thai kitchen. but check the internet as well. I use brown rice pasta as well. go to unico.ca they have tons of receipes. You just have to subsititue rice pasta for regular.

CheerS

Mike Irwin

Ft nelson BC

Remember YOU ARE NOT ALONE

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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