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MissMay

Just Diagnosed.

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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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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

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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.

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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.

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

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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

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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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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!

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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!

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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!

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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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    Okay, thanks. Re: MTHFR - I don't really know yet... I only started reading about it yesterday and it is pretty overwhelming. But it does seem to be common advice that if you have a close relative with it you should be tested, and I guess having 2 copies of the "C" variant, as my sister has, is the "worst" variety of it.  It came to light for her when she was going through infertility and miscarriages.  They discovered that her homocysteine was high, which led to the MTHFR testing. So that is one thing I know I would then want to proceed to do, if I do have it - get my homocysteine tested. My dad died of early-onset Alzheimer's, and apparently there is a link between high homocysteine as well as the MTHFR mutation and Alzheimer's. It also seems like it would be worth knowing if I have it since it could be the cause of my lower levels of B12. And I guess maybe I would need to start taking methyl-folate? I mean, to answer your question, I am not entirely sure what I will do if I do have it.   Probably read a lot more about it... and take supplements like methyl-folate if I really think I need to.  Check my homocysteine & control that if I need to, hopefully to lower my risk of Alzeheimer's.  It seems like a frustrating area because there appear to be limited official medical websites that really even talk much about it (so far).  I have found one article on the NIH that focuses on the link with high homocysteine. I already eat a very healthy diet.  Whole grains, lots of fruit & veg, mostly organic.  I am a vegetarian except for very rare seafood. I avoid processed food and, above all, foods with added sugar...  To me, sugar is by far the worst culprit in the SAD.  I think RA has been ruled out by my 2 negative Rheumatoid Factor tests (one done several years ago, one just this year at my physical).  Also, the way this started in my elbows, and was really only there, for years is just... weird... and definitely doesn't really fit with arthritis.  It may or may not fit with any systemic diagnosis versus a mechanical one, but nowadays I do also have pain in my hands, feet, and knees.  So then I think, well maybe it is/was something systemic, but it was worse in my elbows for some mechanical reason but now has progressed elsewhere.  I thought Chrohn's was just digestive?  (Of course, many people think that of celiac.)  So I haven't really investigated that one much. My ANA was retested and is back down to "negative," so I think that pretty much rules out lupus.  I believe fibromyalgia is still on the table. Anyhow....  Your point is nonetheless taken.  I do want to rule out celiac and go from there.  At this point I'd sure love to find out it is something I could control through my diet!
    Hello, I've been suffering abdominal issues for about two months now. I've been having minor pain and a lot of pressure in my left abdomen. It feels almost like someone is inflating a balloon on my left side from below the belly button to just below the ribs. At first my doctor diagnosed it as diverticulitis, and put me on antibiotics, however a CT scan was never done. I was advised to stuck to a liquid diet followed by soft foods. I did start to feel better so I tried eating some pasta and toast and started to feel the pain and pressure again. My doctor then put me on stronger antibiotics and had me go back to the liquid and soft foods diet. Again I started to feel better and added in pasta and toast. Just like the first time the pain and pressure came back. My doctor then ran more bloodwork looking for other problems, including TGG IGA and TGG IGG. The TGG IGA came back <1.2 (negative), the TGG IGG came back 8.3 weak positive. My doctor thought that could point to potential celiac and ordered two more tests to look for celiac (I'm not sure which tests) and advised me to cut out gluten while waiting for the results.  I started researching celiac a little bit which is how I ended up here. I found a few things interesting. In the past 15 years I was diagnosed and treated for IBS, acid reflux, and chronic daily headaches with migraines. From the little research I've done it looks like all those could potentially be related to celiac. I'm anxiously awaiting the results from the new bloodwork, and hoping that I may be on the road to recovery! 
    For like $100 more, add the DGP IgA test as well.  The EMA is expensive because it is labor intensive (lab), so consider skipping that test.   Why find out if you have the MTHFR gene?    What is that knowledge going to do for you?  I have probably have the MTHFR gene.  My B-12 and Folate used to be off the chart when I was consuming soy milk that was fortified with cheap unmethylated forms of vitamins.    (I used soy milk before my celiac diagnosis because I was lactose intolerant).  I ceased all vitamin supplements and dropped any foods that were enriched  (or you can purchase more expensive methylated versions if you want to supplement) and those levels dropped down to normal levels.  I found that If I ate a normal healthy and varied diet and healed from celiac disease, I do not need supplements.   It appears that I was not able to process unmethylated vitamins because I might the MTHFR gene.  Just a theory.   Knowing I have the gene?  What is that going to do for me?  Will it change my behavior or save me from a new illness?  Can my doctor formulate treatments based on that knowledge?  Can he manipulate my genes?  NOT YET.  This might be beneficial in the future, but science is not there yet.  Just lots of websites trying to sell you vitamins.  Believe me, I have a family full of Autistic family members, so the MTHFR topic is of interest to me. Consider ruling out celiac disease first, address other issues that can impact joints like RA or Crohn’s), then eat a healthy diet that may or may not include gluten or processed food.  I have a friend who is on week three of the Whole 30 diet.  She ruefully confessed that she is feeling so much better.  In a few weeks, she will add foods back in that might be giving her issues.  I think she realizes that her Standard American Diet is not the healthy way to go.  Although she is happy about feeling significantly better, she is sad because she knows that she is going to have to give up all that junk food which seems to be making her sick.  I hope she moves forward because good health is priceless.      
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