adab8ca

2 years gluten-free and everyday I am so thankful that we figured out what was literally killing me.
It has not been easy but there are more good days than bad.
No more anti depressants. No more weight loss. No more insomnia. Nerve pain is slllllowly getting better.
Never give up hope. There were many many dark days, even after diagnosis because it too me SO long to feel human again.
When the GI said yup, it's celiac, stop eating gluten and you should feel better in a few days and I didn't, I thought he made a terrible mistake. It was the from the wonderful people here that I learned it can take a LONG time. I learned to be kind to myself and celebrate the good days and push through the not-so-good ones.

xo
ada

Yippee!!!

oh my. First, I am SO sorry that you are suffering so much. Many, many times the biopsies can be falsely negative. If they don't look in the right place or take enough samples, damage can be missed. Depending on the blood work they did, it may be also falsely negative if you are IgA deficient. There are tests that can be run for IgA deficient people (one of them is the TTG-IgG) and you should ask your doctor about those.
If they do the test and it comes back negative or won't do the test, I would give gluten free a good try. Many, many of your symptoms are CLASSIC of gluten intolerance. Many people have gotten relief from the gluten-free diet without a "firm" diagnosis.

Good luck!!!

Welcome! Not necessarily a club you wanted to join, but it is better than the alternatives! Firstly, I am so sorry that you suffered so long. How awful and scary. I started getting the neuropathy in Feb 2010 but it got REALLY BAD REALLY FAST and by July I was sure that I was going to end up in a wheelchair. In addition, crippling anxiety and depression. A neurologist that I saw ran a ton of autoimmune tests to rule them out and they came back screaming high for Celiac antibodies and here I am!
Regarding food shopping, the one piece of advice that I wish that people gave me is don't try to replace the gluten filled foods with alternatives. I find most don't taste very good. Try to stick to whole foods, meat (if you eat it), fruit, veggies...Things that have one ingredient are not going to have gluten in them. If the list of ingredients is too long, put it down, you probably don't need it anyway. It WILL get easier and then you can start to explore the options available to you.
The other piece of advice is to be kind to yourself. There will be good days and bad days. You have been ill for a long time, it will take time to get better.
Your wife sounds great, very supportive, she will be happy to get her husband back. I know my husband is so happy to have his wife back!
Read away, ask away, no questions are dumb and hopefully you are on the right track to good health!!!

I'm interested in this topic too.  Maybe I'm too impatient but I'm on week 6 of being gluten free and I don't feel better yet.  So wondering if there might something else that may be making my symptoms continue.

I don't have a lot to contribute to the other intolerances except that I hope you find out what it is and soon...That is horrendous.

Newbee, 6 weeks isn't a long time at all. You could have been sick for years and not really known it. Give yourself time. Some people feel better quickly. Many many more I suspect struggle.
Good luck!

"I just kept fighting and he just kept saying we could figure it out. I thought my heart would burst the day he told some doctor "I just want my wife back"...It was anguish for him to watch me deteriorate physically and mentally. I felt so guilty as I thrashed around in bed in burning pain and I did not want to keep him awake all night, so I would just walk quietly round and round my house, sobbing all night long. For months and months.

But he would not believe I wouldn't get well. That faith in me sustained me."


OMG, Rick said the same thing "I just want my wife back"...He had my back the whole time and even though I was too ill to appreciate it at the time, I really get it now. And I TOTALLY| TOTALLY and TOTALLY (did I mention TOTALLY) relate to the stumbling around the house, sobbing in pain so as to not keep the hubby awake.
You will get there. For sure. I have started having joy in my life again, I NEVER thought I would. And some days are bad, so I really treasure the good ones. I think until someone has gone through "this", they do not get it. I would always hear about people struck with mystery illnesses that nobody could figure out and NEVER dreamed I would be one of those people that was the star of the story!!!
Hugs hugs hugs and calming, cooling nerves...

My heart breaks for everyone that has been deserted by their loved ones when they got so sick
We also thought I was dying. And I was suicidal. Told my husband to divorce me, I was totally ruining our lives. I was a total mess, lying on the couch after work every day just sobbing in pain. I thought I would definitely be in a wheelchair before last year was over, the nerve pain was SO bad and nothing touched it.
My best friend since I was 14 (I am now 42) said she wanted to come over and visit. I was not up to visitors at all. She insisted, she said we didn't have to talk, she just wanted to be there for me, to hold my hand. I thought that was SO brave of her, she did NOT know what she was walking into but risked it anyway.
The other day I told one of the owners of my company (it is a hubby and wife and I was talking to the wife) that I was feeling so much better and she STARTED TO CRY and came and gave me a hug and said it was the best news she had in a long time. So this horrible experience really made me realize that I am not alone. I am not at all trying to brag, sorry, just that I cannot even imagine not having people try to understand when things are so, so bad. I guess my friends, family, employers are the "blessings" that I didn't realize I had until I really needed it.

Hugs to you all...

1) Do not try to replace everything wheat filled with a gluten free alternative. It is not healthy, not practical and most things don't taste that good anyway. Eat fresh naturally gluten free foods (fruit, veggies etc). I wasted SO much time and now basically eat no grains and no processed food and feel much better.
2) Don't rush yourself. The GI Dr. I saw (that never saw a case of celiac like mine) said that I should feel better a few days after going gluten-free. What a stress THAT was since I am 9 months in (feels like years) and still have symptoms (mainly neuropathy). Everyone heals at their own pace, Celiac has no schedule, so be kind to yourself, rest when you have to and embrace the good days!

I just got off the phone with my gi doctor and I now am filled with anger about how things have gone.

To recap.... I was diagnosed with ibs 18 years ago and have been told all my symptoms all this time have been related to ibs. I have been in pain and multiple life altering symptoms. I've been told so many times that it's all in my head or I'm exagerating.  Lately it's been so bad I couldn't even leave the house so my dr sent me to a gi specialist to basically shut me up and a therapist to " talk about my anxiety/depression".
The first visit with the gi he said I am classic ibs but he will do some testing to be sure. Well...good thing he did!!!! I came back with high ttg so they did endo yesterday.
I just got off the phone and he told me he doesn't even need to see the biopsy. There is so much damage I need to immediately stop all gluten and I've probably had celiac all my life!!!!  Basically the last 18 years of my life I could have been better if someone had taken me seriously!!!

The main reason I was doubted was because I am overweight and developed constipation.

I am so filled with questions now. Like is this related to why 2 out of 5 thyroid tests were abnormal? I've just been told it must be lab errors because when rechecked they are normal.
Or why I get low grade fevers everyday?? They brushed that off as unwitnessed by a dr so not true.

All my symptoms are now making sense and although I am relieved to know what I have. I am angry!! I actually believed for so long that I must be crazy.

Oh my. I am screaming with you. And now we breathe.
I too was told I was crazy. It's stress. My endoscopy also had SO much damage he told me to stop gluten immediately as well. Visible to the naked eye terrible damage. I am 42 and he said I probably had it all my life.
So I stopped the gluten and here we are. ANd now you will stop the gluten and you will start to feel better. It won't be easy and it may take a long time but it is much easier to deal with things when you KNOW what you are dealing with.
hugs hugs and more hugs

OK my one digestive symptom was nausea...and then, if you reread my post, it all went down hill from there.
i licked a spoon on wednesday that I used to spread almond butter on an english muffin for my husband and I have been a disaster ever since. I was lying fetal on the floor wednesday night, in so much nerve pain and my guts are still a mess....my poor husband was just beside himself. Maybe print out these stories for your DH, you will VERY likely get sicker some day...this is not a fad, it is a bona fide disease with debillitating effects...I became suicidal last summer from the pain and depression.
i am so sorry that you are not getting the support you need but you need to stand up for your self. He needs to understand this is NOT A DIET. regardless of what you eat on your vegetarian diet, it is irrelevent if it is healthy or not. Of course healthy is better but this is totally not the issue here...

Again, you are lucky that they found this before the damage is so bad it is unreparable. I cannto stress that enough. If I could go back in time, I would LOVE to be in your shoes.

It is daunting, that's for sure...I do feel for you although I do want to poke your husband hard for not being supportive. Not eating in restaurants is not the tragedy that people think it is. .I spent 6 months fetal on a couch, in agony and nerve pain, suffered suicidal depression and lost 30 pounds without trying. I couldn't walk around the block without excruciating nerve pain in my feet. This came on suddenly, I was perfectly healthy for 41.5 years and then last year it ALL fell apart. Tons of specialists, each one shaking their head...The GI that did the endoscopy said I have had this forever, it was not recent. I went from perfectly healthy to dying in a month. And I may have been like you, if I was 39 and feeling healthy I may have also thought it can't be that bad, I can't do it, I can't give it up. I wish, just to give you a nudge, that you come and spend some time in my damaged body and see how radically your life can change. It is hell. I am learning how to live again and it is a daily struggle. Taking 10 years off your life may seem like an acceptable trade off but only if you are healthy until you die and the chances of that are unlikely.
Figuring this out before you are REALLY REALLY sick is a GIFT, not a curse. It is there whether you like it or not.
I am not trying to be harsh, I just want my experience to help someone. Maybe there is some reason that I got this in the most goddawful way...
I wish you all the best! You can do this.

hugs
ada

ps It may be helpful to see a dietician if you can, they may have some good advice
PPS There are lots of resources on the internet as well
http://www.vegetarianceliac.com/
PPS Many restaurants have gluten free pasta and are actually celiac friendly, you just need to do your research, call ahead...

and unfortunately you cannot make anyone do things they don't want to...i was clearly sick for a LONG time without symptoms since the damage was so horrendous but if I had known sooner, I maybe could have avoided the HELL i am in right now. When it hit, it hit me hard and I was 42. Thought I would end up in a wheelchair from neurological symptoms. This diagnosis is a GIFT. She can avoid SO much trouble...Too bad she can;t come live in my broken body for a bit to see what her future likely holds.

So I am gluten-free about 7 months. Have been on a very low carb diet and started drinking soy milk (organic/non gmo) and my neuro symptoms seem to have gone rampant. So today, I am making breakfast for my husband, a toasted english muffin with almond butter. I dropped  the almond butter onto each half so I wouldn't contaminate the almond butter...I spread it with the spoon and promptly PUT THE SPOON IN MY MOUTH AND ATE THE LEFTOVERS on the spoon.
So, no stomach symptoms but every nerve in my body is screaming. Toe, heels, fingers, wrists, tongue, tips of ears, tip of my nose. My shins feel like I have the worst shinsplints.
I am so irritated. I have stopped dairy, soy, most grains to try to get better but instead I am sliding horrendously backwards.
Just venting. Crappy crappy horrible day. Anxiety is huge.

grrrrrrrrrrrrrrrrrrrr.

I don't use mixes or anything as I love to bake too much!  So, my freezer is filled with 20 different flours.  So far I have found very few gluten-free foods and snacks I like.  So, I stick to mainly non-gluten-free foods.  Excluding the 20 flours (that would make my list too long) my staples would be:

- arborio rice for risottos
- jasmine rice (stick in a few bay leaves, kaffir lime leaves, lemon juice, juniper berries, whatever)
- fresh herbs ALWAYS for pestos, compound butters, seasoning blends and so on
- fresh lemons and limes for cooking/baking/making tons of things
- fresh strawberries, blueberries, mangoes, etc. for smoothies
- falafel chips
- garbanzo beans to make hummus
- all sorts of potatoes for different uses
- huge pantry of over 100 spices (many very exotic)
- nuts and dried fruits
- pomegranate molasses for Middle Eastern cooking
- many cheeses (I love to marinate feta and goat cheese and throw halloumi or provolone right onto the grill)
- duck - LOVE it!
- whole chicken for roasting
- exotic meats like goat, pheasant, quail, squab and so on when I can get it
- venison, elk, caribou
- butter
- bacon - it's true; most things ARE better with butter and bacon!  
- gluten-free pancetta when I can find it
- various greens including arugula, radicchio, endive, escarole, mustard greens, microgreens - have to have intriguing salads
- stash of about 30 flavoured oils and vinegars for vinaigrettes, simple syrups, aiolis, and so on
- my pride and joy - aceto Balsamico tradizionale de Modena (aged REAL balsamic from Modena that is as thick as molasses and INCREDIBLE drizzled on strawberries and vanilla ice cream with freshly-ground black pepper - my splurge item
- 20 artisanal salts for various uses (i.e. finishing)

Sorry - that is well over ten but I have so much stuff I could go on and on and on...

I wanna come eat at your house!!!

I miss:
Triscuits
Whole wheat tortillas
Timbits
Fresh french bread from the bakery (Hubby and I ate this for YEARS every Saturday, gluten-free bread does NOT cut it)
Hot, fresh pizza
Fast food of ANY KIND (and I NEVER used to eat it but now that I can't have it, i want it more!!!)


I just hate reading every label. If the list is too long, I just abort and don't bother.

BUT really, as we all know, there are so many things we CAN eat, so I try to celebrate those as much as I can!!!