Stellar003

Thanks for the information on gluten sensitivity. It looks like there aren't a ton of people

researching it, but it isn't unheard of.

I am so thankful for this forum! It's so good to feel like there are other people who understand.

~Stephanie

Thanks so much guys. I feel better today.

Just felt a little shock to the system when

it seemed I no longer had the support of the medical

community per se. It seems there is a lot to be learned

about all of this. Thank you for your words of support.

It truly helps knowing I am not alone.

I have no intention of giving up on gluten free

regardless!

~Stephanie

I know it's hard when you don't tick all the boxes for a clear celiac diagnosis, but as others have said, the positive antibodies really do mean something.

I had positive antibodies (gliadin was about 4 times normal and ttg was about twice normal) and a negative biopsy, but I was convinced by the gastroenterologist that I didn't have celiac so there was no way that gluten was making me sick. He actually told me not to even bother going gluten free.

I wasted another year of my life in sickness and misery before a good dr told me that gluten was the reason I was so sick. She considers me a celiac, and has referred me to other drs as such. I suffered from awful depression, massive deficiencies and horrible gi symptoms, and if I had gone gluten free when the antibodies were first detected I am sure that it wouldn't have been so bad, and it wouldn't have been so hard to regain my health.

I am technically gluten intolerant, but gluten destroyed my health and over 2 years gluten free I am still healing. Please give the diet a very long and thorough trial. I found a few minor symptoms resolved very quickly, but it did take months for my digestion to start to improve and my depression to lift. It's taken even longer to slowly regain my health, but that has been due to other intolerances causing symptoms and messing with my digestion. The point is that you need to see it as a journey with a long timeline, and don't give up if you don't feel amazing in a month or two.

We are finally starting to see some research in to gluten intolerance, and i think in 5-10 years there will be a far greater understanding of the seriousness of our condition. But until then, you will have to listen to your body and the lovely people here and let your own research inform your understanding of your gluten intolerance. It is real, it is serious, and you do have to be 100% gluten free, and avoid all cross contamination.

Good luck and i hope you feel better soon, I know exactly how it feels to be where you are, and it's hard work!

So my biopsy and TTG tests came back negative and I feel hopeless and confused.

I was putting so much hope in a Celiac diagnosis...

I'm confused about gluten intolerance vs. Celiacs and I want so badly to be

done with this diagnostics phase!!! So my gliadin levels are high and I'm gluten

free going on three weeks and I am seeing some changes in my D and possibly

energy...the last 20 years have been a big hazy blur and I can't stand the thought

of not knowing what has been wrong. I just wanted a solid diagnosis. I want to be

able to explain to people that I love why I've been so out of it all these years

and now I'm scared that being gluten free might not make me feel alive again,

that I might be back to square one of having no idea what the hell is wrong

with my body. It sucks to hear from a physician that in general my labs look great. What good

are good looking labs when I feel like a zombie?? My joints hurt, my memory is insanely awful

and I cannot remember what a normal stool looks like. So frustrated and down

Any words of advice?

~Stephanie

I wanted to shout for joy this morning while cooking eggs for my husband and a young boy who is staying with us while he gets back on his feet.

I kept exclaiming outloud how great I felt! It has been weeks since I've had enough energy to do anything other than chuck some yoghurt and muesli into a bowl at 6am. This morning, I picked rocket in the garden, caramalized some tomatoes, scrambled some eggs and chucked some sprouts over it all with a wonderful sense of lightness and health!

Seems like a silly thing to be excited about, but I'm super grateful to not be suffering from jointpain, tiredness and dissiness anymore!!

Gluten free is proving its worth more and more! Specially cause I've lost just under 2kg's in the last 2 weeks. :)

It's so cool to hear this Brigitte!

I still have times throughout the day where I feel like I need to nap,

But I was telling someone today- something is beginning to feel different.

It's almost like my cells are beginning to feel alive, when I am awake,

I feel more awake than I used to. I used to drag my limbs around all day,

Every step was an effort. I feel so thankful to finally have an answer after so many

Years of feeling partially alive!

I'm afraid I don't have anything helpful to add Suzanna, but thought I would co-miserate for a moment and admit that I actually gave the bakery the middle finger as I walked by all the goodies lol. On a positive note, I feel my energy level slowly rising....I'd rather eat foam board everyday than walk around like a zombie for another 20 years!

I hope you survive the party...and hope it helps knowing you are not alone!

Stephanie

It sounds like you have all the proof you need for sure, but I'd say if you have good insurance it can't hurt to have the biopsy. I just had one and it is a really simple procedure. The worst part for me was the anesthesia hangover feeling (closely followed by the pain of removing the tape from my arm where the had the iv in which is like a free wax job) good Luck to you!

Pre-diagnosis I was not hypoglycemic, but I've found that now that I am gluten free...I get shaky in the morning if I don't instantly eat. So, I have to eat some protein quickly and then eat way more regularly than i used to. It's no fun, but that is how my nutritionist said to eat anyway. I live on rice cakes and almond butter. Also Lara bars are always in my purse. It sounds like i need to be tested again for blood sugar issues also....

I notice that I always get canker sores after a dentist visit....not sure about the other symptoms, as I'm newly diagnosed and wasn't watching for any correlation. I sure will next time. Thank you for bringing up this topic!

Just curious, how many of you had negative biopsies and positive blood work?

Also, those of you with positive biopsies, was your physician able to tell just from

Looking during the endoscopy that your villi were flattened or did the biopsy via microscope confirm Celiacs?

Thanks so much!

Stephanie

If i had to choose a symbol i believe it would be a Phoenix!

I just had an endoscopy yesterday because i know myself, it would drive me crazy not knowing what is going on with my intestines. I decided all the confirmation i can get will help me in dealing with it all psychologically. Plus, i wanted to make sure there were no other problems present...related or unrelated.I am only two weeks into gluten free diet, so I felt an urgency to get it all done quickly. If you are unwilling to do the gluten challenge, which I totally understand because I wouldn't either, Its my unprofessional opinion that you are fine without an official diagnosis (if your symptoms are gone) Trust yourself and stick to what makes you feel good. However,if it would make you feel better to be tested in the long run....maybe you should. Having Celiacs and not officially being diagnosed is fine so long as you are gluten free, the bigger issue is what if it is some other disease. I think having a healthcare provider that you trust mAkes all the difference in the world. If you aren't sure that you are getting sound advice, keep on searching for a doc you trust. Good luck!

Is there anyone in our family with hemachromatosis?

Thank you for the suggestion! I'm not aware of that diagnosis in my family but i just looked it up and it sure sounds familiar. I must go ask my doc about it!

I have low vitamin D, low. Calcium and HIGH iron. Has anyone else had this?

My doc has no idea what to make of this. I do not take any supplements with

Iron or cook with iron cookware. Very strange and a little disconcerting....especially

Since I've been anemic for most of my life!

I believe that I too had a trigger, or combined triggers. Stress at work (Social Services), then I retired and in order to get the family healthy I went whole wheat on everything i could. Talk about an over dose of gluten! I've had symptoms on and off all of my life but it was right after the stress & wheat over dose that I became very sick.

I have always believed that I never really recovered from having mononucleosis

When i was 16. All through high school and college my fatigue was unbareable.

With my week old diagnosis (20+ years later), I am now looking at mono as a very

Likely trigger. My GI symptoms (with the exception of nervous tummy as a child,

Which I attributed to my shyness) appeared after a really bad bacterial or viral bout

Of D that lasted uncontrollably for almost three weeks (This was my freshman year Of

College). I started having obvious gurgling regularly and noticed some foods bothered

Me more than others...then i gave birth to my daughter at 23 and things worsened again.

Finally my son was born five years later and the heartburn appeared and D became worse again...followed by

Joint aching, hair loss and numbness in fingers and toes.

Who knows what the reality is, but it sure seems like there are a lot of folks here that had

Various stomach bugs that seemed to be the trigger.

I am just so glad to have an answer to why i have felt unwell for so much of my life!!!

I am looking forward to reaching the one month, six month, one year gluten-free milestones....

Come on energy!!

I was just diagnosed last week by dr. Loan huynh. Her number is 919-791-0445

She is a chiropractor and seems fairly new at the gluten free topic, but maybe she can

At least get you tested or send you to someone else.

Good luck!

I realized a few weeks ago, after hearing Elizabeth Hasselbeck talk about celiac/gluten intolerance, and doing more research, that at minimum I am gluten intolerant. I have been on a Gluten free diet for the last 1-2 weeks and feel so much better; that is, until I accidently get glutened! As I read more about the symptoms, and realized that this rash that I have had for more than a year may be dermatitis herpetiformis I realized that I need to find a good doctor who specializes in (Celiac) this area. Can anyone recommend a doctor in the Raleigh, Durham, Chapel Hill, NC area? Thanks for the help.