Looking For The Right Place

[BlueDotty]

I'm not sure I'm posting here appropriately, so please forgive me if I'm not. I've looked all over the web for a forum for non-celiac gluten senstive/intolerant people and I don't find anything. Just this forum for celiacs.

 

I learned of the possiblilty of NCGS after going on a low-carb diet to lose weight and suddenly feeling sooooooooo much better, and having symptoms that I'd had for years suddenly diminish or vanish completely.

 

Here are the symptoms I've experienced, with no diagnosis or help/support from the medical profession. I've pretty much given up on that route.

 

Age at onset    Symptom

3-5           tooth decay/dentures at 18
3-5           Anxiety and agitation
12            Muscle cramps (Charley horse)
13            Depression
20-30       Infertility (5/0)
20            Bruising easily
25            Irregular/pounding heartbeat
14            Acne/sebacious cysts
40            Carbuncles in groin and armpits
40            Chronic hunger
40-45       Rosacea
40            Obesity
40            Bloated feeling and puffy face
40            Sensitive to smells/chemicals
55            Swollen ankles
55            Lower back pain
55            Allergies (pollen/dust)
57            Cold feet
60           Joint pain/muscle pain and stiffness
60           Shortness of breath
60           Tingling/stiff left foot
62           Hands numb & tingling during sleep
63           No energy, sleeping too much
60           Cataracts (removed at 62)
62           Double vision

 

I'm not asking if anyone thinks I have NCGS. Since eliminating gluten every single symptom has decreased by 50-90% and it's only been two weeks (one low carb, second gluten free). I doubt anyone is going to think I'm wrong in my self-diagnosis.

 

My question is...does anyone know of a forum for people like me? I do not believe I'm celiac (my sister with same symptoms and then some has been tested negatively) and I don't want to offend anyone who really has celiac by posting here. Plus, some of the info for true celiacs may not be pertinent to NCGS folks.

 

Thanks in advance!

[kareng]

You can post here. The treatment is the same - gluten-free diet.

That said - I am sorry you didn't test for celiac before going gluten free. You have so many celiac symptoms on your list, ones that aren't symptoms of NCGI.

[BlueDotty]

You can post here. The treatment is the same - gluten-free diet.

That said - I am sorry you didn't test for celiac before going gluten free. You have so many celiac symptoms on your list, ones that aren't symptoms of NCGI.

I'm curious...which symptoms are you referring to? From my research, all the symptoms fit with NCGS (or NCGI). My mother also had asthma and severe exema and I know she was tested neg for celiac. In fact, her mother probably had gluten ataxia (never diagonosed...they told her the fact that she had no balance and couldn't walk without hanging on to something was "in her head"). She became housebound and died at 62.

 

Another question, if you don't mind. What would be the advantage of testing, since the treatment (gluten-free diet) is identical?

 

Thanks for the reply!

[kareng]

Tooth decay, infertility, mental health issues, no energy, etc.

 

Open Original Shared Link

 

One reason to be diagnosed at your age is that Celiac is a very real automimmune disease.  If you are hospitalized or have to go to a rehab facility or nursing home, you will need a diagnosis to have any chance of getting a gluten-free diet.  

 

There are things that should be tested for &  followed - like osteoporosis.  If you have children, they should be tested as Celiac is a genetic disease.

 

Please read on the website I have linked to.  

[BlueDotty]

Tooth decay, infertility, mental health issues, no energy, etc.

 

Open Original Shared Link

 

One reason to be diagnosed at your age is that Celiac is a very real automimmune disease.  If you are hospitalized or have to go to a rehab facility or nursing home, you will need a diagnosis to have any chance of getting a gluten-free diet.  

 

There are things that should be tested for &  followed - like osteoporosis.  If you have children, they should be tested as Celiac is a genetic disease.

 

Please read on the website I have linked to.  

OK...I see your point. However, I'm simply not willing to get sick again just to prove to some doctor that I was able to figure out what they had no clue about for 64 years. I was miserable for many years and lost the opportunity to have a family. I have very little faith in the medical profession. I also have crappy insurance with a $2,500 deductible that I have to hit before they pay anything, which means any testing (even if I decided to do it since it's only been just over a week gluten-free) would come directly out of my pocket.

 

My other hesitation is that I keep reading you can get tested and it comes back negative and you still can have celiac. The test seems to be very unreliable. So I might spend all that $$ and learn nothing anyway.

 

I guess I'll have to take my chances and cross the "prove it bridge" when I get there.

[cyclinglady]

I was formally diagnosed with Celiac Disease, but my husband was not.  He's been gluten free for 13 years at the advice of his doctor and my allergist.  His symptoms of body aches, fatigue, extreme snoring, sinus congestion, etc. have gone away.  He'd be the first one to tell you that he's seen that I have received so much more support from family and my medical team, but there is no way he will get formally tested at this point.  He knows that gluten makes him sick.  

 

I am glad for a formal diagnosis, since it may help identify others with celiac disease in my family.  I have some cousins with the same issues, but they were not tested properly.  They went gluten free and now feel great, but they'll never really know if they have celiac disease or not.  

 

Your tingling and numbness?  That could be celiac disease related or it may be diabetes.  Are you anemic (shortness of breath)?  Thyroid okay?

 

Welcome to the forum.  Read the newbie thread under the coping section for valuable tips!  Cross contamination is a serious issues for those of us who have celiac disease or NCGI.

 

Take care!

[BlueDotty]

I was formally diagnosed with Celiac Disease, but my husband was not.  He's been gluten free for 13 years at the advice of his doctor and my allergist.  His symptoms of body aches, fatigue, extreme snoring, sinus congestion, etc. have gone away.  He'd be the first one to tell you that he's seen that I have received so much more support from family and my medical team, but there is no way he will get formally tested at this point.  He knows that gluten makes him sick.  

 

I am glad for a formal diagnosis, since it may help identify others with celiac disease in my family.  I have some cousins with the same issues, but they were not tested properly.  They went gluten free and now feel great, but they'll never really know if they have celiac disease or not.  

 

Your tingling and numbness?  That could be celiac disease related or it may be diabetes.  Are you anemic (shortness of breath)?  Thyroid okay?

 

Welcome to the forum.  Read the newbie thread under the coping section for valuable tips!  Cross contamination is a serious issues for those of us who have celiac disease or NCGI.

 

Take care!

I've been tested for Diabetes. Plus, I seriously doubt that peripheral neuropathy induced by diabetes would be reduced by 80-85% in less than ten days just by going gluten-free. I'm sure some poor diabetic would have stumbled upon that bit of wisdom at some point and shared it with others. My understanding is that PN from diabetes is irreversable.

 

I was a bit short of breath, but that is also subsiding, unless I climb up the (steep) stairs at work. Since I'm still overweight (but have lost 5.5 lbs in ten days with no effort), I suspect that will abate as I continue to lose. This is the first weight I've dropped in years, even though I was on a perpetual diet. I'm beyond thrilled!!!

[NoGlutenCooties]

Hi BlueDotty and Welcome to the Forum!

 

There are lots of NCGI folks here and many self-diagnosed folks who consider themselves to be either Celiac or NCGI but aren't really concerned about proving which one because for them, it really doesn't matter - the outcome is the same.... 100% gluten-free for life.  So welcome!  You've come to the right place and I can promise you that no one is going to get offended at NCGI questions/comments. 

 

It's great that you're already starting to feel better!  Some folks experience withdrawal when they first go gluten-free and some have certain symptoms actually get a bit worse before they get better.  Some get periodic flare-ups.  So please don't get discouraged if any of these happen to you.

 

Good luck!

[BlueDotty]

Hi BlueDotty and Welcome to the Forum!

 

There are lots of NCGI folks here and many self-diagnosed folks who consider themselves to be either Celiac or NCGI but aren't really concerned about proving which one because for them, it really doesn't matter - the outcome is the same.... 100% gluten-free for life.  So welcome!  You've come to the right place and I can promise you that no one is going to get offended at NCGI questions/comments. 

 

It's great that you're already starting to feel better!  Some folks experience withdrawal when they first go gluten-free and some have certain symptoms actually get a bit worse before they get better.  Some get periodic flare-ups.  So please don't get discouraged if any of these happen to you.

 

Good luck!

Thank you NoGlutenCooties! I have to admit I was feeling a bit discouraged by the implication that I must have a medical label slapped on me or suffer negative consequences. LOL I understand that some Dr. in the future may not accept my conclusions, but at this point I simply don't care. It's such a relief to feel GOOD after all these years and to not be in pain. I can't even imagine going back to that simply to prove something to some Dr. Plus, who knows...by the time I have to prove it...they may have a test that doesn't require people to be sick to be diagnosed.

 

For the first time since adolescence I have clear skin. Just that ONE thing is enough to make me refuse to eat gluten again for any reason.   Even my neighbor is happy since I gave her all the food I cleaned out of my kitchen that has gluten/wheat, etc. Lordy! They put wheat in everything!! Makes no sense.