Gluten Intolerant But Not Celiac

[laura1959]

I was here a few weeks ago with a strong suspicion that celiac is my problem.  Since then, I got copies of my antibody test results and decided that they were pretty strong indicators that I do not have celiac.  Before anyone asks, I am sufficient in IgA, so it's not that.  I also discovered that my gastroenterologist did suspect celiac as one possible diagnosis before going in for the endoscopy I had, so it's clear that he would have looked at that region of my intestines.  I had thought that he had not done that before.  Since there's no report of anything amiss from that part of my body, I think I can safely conclude that I do not have celiac disease.  I do have a genetic test out there which will tell me if I have any genetic predisposition to celiac, but I don't expect that to be abnormal, since none of the other stuff was.  

 

I was borderline low in vitamin D on other testing done around the same time, and decided that was probably the whole of my problem, especially since the improvements I felt on the gluten free diet also correlated with beginning vitamin D supplementation for the osteoporosis.  

 

So, I decided to chuck the gluten-free diet.  I didn't get intestinally sick after eating gluteny food, but after several weeks I have noticed that the increased energy and mental clarity I had regained after beginning the diet / supplementation has really receded and I'm back to being the slightly stupid slug I had become prior to the diet.  

 

I guess this means that I have some sort of gluten intolerance which is not celiac disease, so I've decided to adopt the gluten free diet again and just stay with it as though celiac were my problem.  Fatigue and brain-fog are huge things I battle through each day, and if this diet fixes that, for whatever reason, I'm in.  

 

I didn't really see an appropriate place here for people who aren't true celiacs to participate in discussion about symptoms, etc.  Not sure if I should continue posting on celiac.com as a certified non-celiac, but I will certainly continue to participate here to find information about foods and diet, etc.  Thanks for being here and being such a great resource!  

[1desperateladysaved]

I believe you are welcome to post.  You would have many of the same problems.  Other people who are here who do not have celiac disease, at least not a positive test.  You passed the gold standard test in that you improved on the gluten free diet.

 

Get well, stay well,

 

D

[cyclinglady]

Of course you are welcome!  There are plenty of folks on this forum who are gluten intolerant.  

 

I didn't have any intestinal symptoms when I was diagnosed.  Just went in for a routine colonoscopy and the doc noted that I was anemic (low iron stores) and had Hashimoto's Thyroiditis.  He asked if I had stomach issues but I told him only when I ate foods that I was allergic to or intolerant (e.g. eggs, milk, garlic....)  I couldn't possibly have celiac disease.  My husband has been gluten free for 12 years.  What are the odds that both of us have gluten issues?  My blood test came back as "mildly celiac" (or borderline).  Between my blood test and the biopsy, I ate bread like a fiend (a loaf a day).  Then the intestinal issues started.  By the time I had the biopsy, I knew I had celiac disease and my biopsy showed Marsh Stage 3B (moderate to severe damage).  

 

Going gluten free was pretty easy.  I was already cooking gluten free meals for my husband.  But, I still went through a grieving process and I'm still grieving.  It became worse when I fractured a vertabrae doing NOTHING!  Went for a bone scan and I have osteopenia.  Now, I'm afraid to get back on my bike.   I don't want to run as I might break another bone, so I'm just walking and swimming.  I knew I'd have to give up these activities eventually but I didn't expect this to happen in my 50's.  

 

Getting back to you and gluten intolerance.  My husband has never been tested.  He went gluten-free on the advise of my allergist and his GP.  After a year of struggling he realized that eating gluten was not worth it.  He didn't have intestinal symptoms, but sinus issues, snoring, body aches, feeling like he had the "flu" for a couple days after ingesting gluten. 

 

So, you are welcome to participate in this forum.  It's been a life saver for me.    Good luck and keep me posted on your osteoporosis diagnosis.  I'm anxious to see if I'm able to build bone since I have just entered menopause.

[notme]

hey, laura - the way i look at it, we're all kind of the same boat - the ss gluten free - lolz  

 

cyclinglady - i am NOT looking forward to the Big M!!!!!!!!!!!!!!!!!  but it will be easier since gluten is out of the picture.  i've not had my bone density taken yet - i hope it's not too awful.  

[Tbolt47]

Laura,

 

I am not certain of the age most folks around here were diagnosed with Celiac. From the research I have done it appears late 40's and 50's is when the majority of cases are clinically diagnosed. Celiac seems to " smolder ' for years, even decades, as another seemingly unrelated malady. At what point did/does the constellation of symptoms become clinical " Celiac". The classic histology of Celiac within the small intestine is patchy, requiring several sample sites along the intestine ( this protocol is not always followed). In every diagnostic test there is  a certain percentage of false positive and false negative responses. 

Also, there is plenty of empirical proof, some going back to the 1940's, that avoiding gluten can have  health benefits for otherwise healthy individuals.

[Celtic Queen]

I have a friend at church that is Non-Celiac Gluten Intolerant. She has been tested twice for Celiac and has come up negative both times.  And her mother is a diagnosed Celiac, so her risk of having the disease is high.  Despite two negative blood tests (after gluten challenges), she's decided she may not be officially at Celiac, but she cannot eat gluten without problems.  This is just more proof that the testing is flawed.  And the only real way to know if a person has NCGI is if they improve on a gluten free diet.

 

Personally I believe NCGI and Celiac are part of a large spectrum all relating to the same issue, with symptoms ranging from minor to major. 

[laura1959]

Thank you all for making me feel welcome.  Yes, it's an odd thing to have the clear benefit from not eating the stuff, but to have all the testing come back with no indications of disease.  It's clear even after only a few days of not eating gluten again that I have much more energy and focus without that in my diet.  Whatever-- I guess I don't need to hang a label on it, I just need to take it seriously.  It will be interesting to see if the genetic testing shows any elevated risk for celiac.    

 

My husband was marvelous-- yesterday he went through the cupboards and fridge and got rid of EVERYTHING that might have contained gluten.  All the wheat flour, Bisquick, anything resembling bread or bready stuff, all in the trash.  Then he went out and bought a whole pantry's worth of gluten-free replacement products.  I guess he's on the bandwagon with me, which is wonderful.  

 

Celtic Queen, you may be right about the spectrum and it may also take some time for the disease to fully develop.  I had a dog with autoimmune disease which was kicked off by a rabies vaccination.  He was healthy for years, up until about 6 months after his last rabies shot, then he just fell apart.  I'm sure any testing for AI when he was younger would have shown nothing, even though it was clearly in there waiting for the right set of circumstances to really kick it out and into a symptomatic state.  Could be the same with gluten intolerance.  

[Celiac Mindwarp]

There is recognition that it is a spectrum, not got references handy.... Fairly new work, and goodness knows not many doctors know about it yet. You are in the club!

I hope you will find the board welcoming. My tests including genetic all came back negative and I was given an NCGI diagnosis. Plenty of folks here are ncgi or self diagnosed. They even made me a moderator here!

Read around and get an idea of making the transition, ask questions. It is worth eating lots of nice fresh simple foods to start while your body heals.

Good luck

[laura1959]

The genetic testing is in, and I do not have the marker at HLA-DQ2.5 that is most often associated with celiac disease.  

 

However, I do have things at other places that place me at slight risk for non-specific inflammatory problems that can be associated with celiac disease.  Here's what the report says:  

 

4q27 region

 

 

This SNP is located near two genes – IL2 and IL21. Each gene encodes a protein involved in regulating immune cells. Studies have implicated both of these proteins in intestinal inflammatory diseases other than celiac disease.

and:  

3p21 near CCR3

 

 

This SNP is not located in any known gene, but the region contains a number of genes that are related to the immune response. These genes, including the closest gene CCR3, encode chemokine receptors, a class of proteins that bind to molecules known as chemokines. Chemokines play important roles in regulating the movement of white blood cells and, along with their receptors, have been implicated in several diseases.

Multiple studies have identified this SNP to be associated with celiac disease in populations with European ancestry.

So, as with everything else, nothing is crystal clear.  The test on HLA-DQA only looked at 2.5, so I could still have some kind of atypical celiac.  I either stop here or I spring for the more expensive genetic testing, but I'm not sure what that might accomplish, since I'm already gluten free.  I just wish I had a definitive answer.  

[Celiac Mindwarp]

Do you get sick when you eat gluten?

Sadly that may be as much as you get in the way of answers.

Check out exactly what other information you could get from tests by all means, but remember genes only show a predisposition anyway.

I tell people I have a massive gluten intolerance like celiac disease. It may not be completely accurate, but people seem to understand.

My life has turned around since I discovered gluten intolerance, and a few other food intolerances, I look different, feel different and have more energy.

I hope you can find a way to come to terms with things. Maybe the other AI and inflammatory stuff will help you have good reason to have a good clean diet.

[answerseeker]

Thank you all for making me feel welcome. Yes, it's an odd thing to have the clear benefit from not eating the stuff, but to have all the testing come back with no indications of disease. It's clear even after only a few days of not eating gluten again that I have much more energy and focus without that in my diet. Whatever-- I guess I don't need to hang a label on it, I just need to take it seriously. It will be interesting to see if the genetic testing shows any elevated risk for celiac.

My husband was marvelous-- yesterday he went through the cupboards and fridge and got rid of EVERYTHING that might have contained gluten. All the wheat flour, Bisquick, anything resembling bread or bready stuff, all in the trash. Then he went out and bought a whole pantry's worth of gluten-free replacement products. I guess he's on the bandwagon with me, which is wonderful.

Celtic Queen, you may be right about the spectrum and it may also take some time for the disease to fully develop. I had a dog with autoimmune disease which was kicked off by a rabies vaccination. He was healthy for years, up until about 6 months after his last rabies shot, then he just fell apart. I'm sure any testing for AI when he was younger would have shown nothing, even though it was clearly in there waiting for the right set of circumstances to really kick it out and into a symptomatic state. Could be the same with gluten intolerance.

I wonder if there is some sort of pre celiac spectrum. Like pre-diabetic? If you have osteoporosis isn't that a pretty strong indicator? Perhaps early stages of the disease but no damage yet? Makes me wonder! Anyway there are many on here who are NCGI the symptoms are the same just no malabsorption or damage like with celiac.

[cyclinglady]

hey, laura - the way i look at it, we're all kind of the same boat - the ss gluten free - lolz  

 

cyclinglady - i am NOT looking forward to the Big M!!!!!!!!!!!!!!!!!  but it will be easier since gluten is out of the picture.  i've not had my bone density taken yet - i hope it's not too awful.  

Let's hope!