Should I get tested?

[Mrs. Bond]

To make a long story short, I've been gluten-free for 20 years. I've asked doctors about possible celiac multiple times (actually, my mom did when i was little), but I didn't have the typical symptoms so the doctors didn't think it was likely. About 20 years ago, after the 2nd doctor discouraged me from getting tested, I decided to go gluten-free on my own. It helped clear up some weird problems I was having, so I've been (imperfectly) gluten-free since then.

For most of this time I wasn't sure if I actually had celiac or not, but didn't think I needed a test to know I shouldn't eat gluten. I don't have a lot of gastro symptoms, but other assorted unexplained problems (headaches, rashes, poor sleep, nosebleeds, anxiety). And, of course, I would have to go back to eating gluten again to get the test and didn't want to deal with that.

Now, I say "imperfectly" because I've never been super strict about things like cross contamination. I used to think I could get a way with a few bites here and there, without any noticeable problems. For many years I would start to get a rash on my face, or hands and feet, if I was sneaking too much so then I would know to cut back.

Suddenly things changed in Spring 2017, and I started to have some different unexplained symptoms (neuropathy, night sweats, fatigue, allergy-like symptoms/rhinitis). Until the pandemic I saw lots of different doctors, had allergy test, a sleep study, minor surgery for a deviated septum, lots of allergy meds and nasal sprays and still didn't feel much better. The rhinitis and poor sleep have persisted since then. 

Finally, after a big flare up about 6 weeks weeks ago, I connected all this to nutrient deficiencies that are probably/possibly caused by celiac disease. Based on my own research because my doctor was being completely unhelpful 🙄. It's so frustrating to deal with doctors who don't know what's wrong with you.

So I'm wondering if I should finally get tested so the doctors could possibly connect any weird symptoms to celiac. I asked my current doctor about this and he says it wouldn't change anything about my treatment 🙄. I don't think he knows that much about celiac or what problems nutrient deficiencies could be causing 🙄. And lots of doctors don't, so maybe it doesn't matter?

Of course, it never seems like a good time to go back on gluten for 6 weeks. Although I am kind of fantasizing about things I could eat 😅

The other thing I'm wondering about is if I should get my kids tested. My daughter seems to have some symptoms that could be related. I'm not sure about my son. If I was positive I would send them for a test too. Almost all of my family members on my mom's side are gluten-free.

[trents]

Welcome to the forum, Mrs. Bond!

The symptoms you describe could be due either to celiac disease or NCGS (Non Celiac Gluten Sensitivity). They share many of the same symptoms and NCGS is 10x more common. However, there is no reliable test available for diagnosing NCGS as of yet. Celiac disease must first be ruled out. I do believe from the testimony of others on this forum that neurological problems can be caused by both.

If I were you, I would consider getting genetically tested for the presence of celiac genes. This would not establish whether or not you have active celiac disease but would establish whether or not you have the potential for it. About 40% of the population carry one or more of the two main genes that have been connected to celiac disease but only about 1% actually have celiac disease. It takes not only the genes but some kind of biological stress trigger to turn them on. I believe at least one more gene has recently been discovered but let's stick with what we know for sure. If you don't have either of the genes you can effectively rule out celiac disease but not NCGS. 23andMe is a third party company that you can do this through. I believe it costs around $200 US. https://www.23andme.com/topics/health-predispositions/celiac-disease/

Genetic testing would not require you to go back to eating gluten.

Another possibility is to go back on regular amounts of gluten consumption for two weeks and get an endoscopy/biopsy of the small bowel lining done by a GI doc. Does your insurance allow you to directly make appointments with specialists?

But the simplest and least painful course of action is to get serious about eating gluten free and see if your symptoms improve. By your own admission you have been cheating a lot on the gluten.

Edited June 10, 2023 by trents

[patty-maguire]

Between the symptoms and family history it sounds like celiac but there is no way to be sure without testing. 

There are pros and cons.  The pros are:

• You're more likely to stick to the diet and avoid the long term and serious consequences. 
• You'll get follow up care
• You'll have more luck being taken seriously by friends and family who might otherwise think you're following this silly diet because of a fad or for attention.

The con is simply that the gluten challenge is hard.  Many people just can't do it. 

Yes you should have your kids tested before they go gluten free.  Especially if you test positive, but even if you decide not to get tested, the symptoms and family history point in that direction.

Another option for you might be genetic testing.  You don't need to consume gluten for this one.  On it's own, genetic testing doesn't diagnose celiac as many people have the gene but never develop the disease.  But it would rule it out if you don't have it.  If you do have the gene, paired with your symptoms and family history it may be good enough. 

All the best. 

[Kurlykaitlyn]

Hi there, your situation is such a tough one and I feel for you because I was in a similar place pre-diagnosis. I had an ED for some years and avoided gluten to begin with- therefore I hadn’t eaten much gluten for some years.  when I had an endoscopy I remember the doctor hesitating while telling me ‘it doesn’t look like celiac disease…so it’s probably just IBS.’ I’d never heard of celiac so the statement stayed with me and I realized I had such similar stories and symptoms to people who do have celiac. 
i decided to eat the gluten every day for weeks to be properly diagnosed. Let me tell you - it was HORRIBLE!! Some of the worst weeks of my life. I was officially diagnosed, but I destroyed my gut health in that time and my body was just like crossed wires everywhere. Severe Anxiety, chills, dizzy, pain, inflammation, etc. If you feel strongly that you are better off without gluten, maybe you want to decide for yourself and truly avoid it, contamination and all. It’s up to you and how sensitive you are to gluten. I’ve become more sensitive to gluten exposures the longer I’ve been celiac. Sensitivity increase seems to be a common experience among many who give up gluten. You could get your kids tested and if they’re celiac, assume for yourself? 
it’s a hard choice to make. Think about the pros and cons for your own health and well being. 

Doctors don’t understand celiac unless they’ve done specialized study or know someone personally. You can try reaching out to a specialized celiac doctor and they can better guide and direct you, even for your concerns here! Good luck! 
 

[Mrs. Bond]

Thanks so much for your responses! 

I think I am going to start by seeing if can get my daughter tested. Then if she's positive then I don't think I would need to do it myself. If she's not, then what? I really don't t know what will happen if I start eating normal amounts of gluten again. Maybe I'll try it and see? I can always stop after a week if it's too difficult.

Either way it seems like I'm going to have to do my own research to find out if any health problem I'm having is possibly related to celiac or nutrient deficiencies, because the doctors usually don't know.

I'm also doing some research now into probiotics and celiac, which is interesting. Could be something else to try.

[trents]

Mrs. Bond, why are most on your mother's side eating gluten free already?

If your daughter is positive, she could have gotten the gene from her father and not you. That would not necessarily prove you have celiac genes.

[knitty kitty]

This article will help your research on nutritional deficiencies...

 

[Mrs. Bond]

@patty_maguire I just noticed you're in Ontario - me too!  What has your experience been with doctors understanding celiac? What kind of follow-up care have you been able to access? 

One of the things I really wanted was some help on figuring out which supplements I should be taking. Although, I already went to a naturopath for that, which I had to pay for (and was not cheap!).

And do you know what I would need to do to get the genetic testing? Is that covered by OHIP? I saw that the blood tests are covered until March 2024 so that's another reason to do that soon.

[patty-maguire]

On 6/11/2023 at 11:03 AM, Mrs. Bond said:

@patty_maguire I just noticed you're in Ontario - me too!  What has your experience been with doctors understanding celiac? What kind of follow-up care have you been able to access? 

One of the things I really wanted was some help on figuring out which supplements I should be taking. Although, I already went to a naturopath for that, which I had to pay for (and was not cheap!).

And do you know what I would need to do to get the genetic testing? Is that covered by OHIP? I saw that the blood tests are covered until March 2024 so that's another reason to do that soon.

Sorry for the tardy reply, I missed your comment. 

Yes I'm in Ontario.  When I was diagnosed in 2012 it wasn't good.  My dr didn't want to believe I had celiac even after my tests came back positive.  I've since moved to a different town and have a new doc.  I printed the follow up care guide from Celiac Canada and took it into my new doc and he's been really good.

Genetic testing is not diagnostic for celiac.  About 30 - 40% of the population have the gene but only 1 - 3% develop the disease.  I personally did 23andMe after I was already diagnosed.  It was a little over $100.  My suggestion would be to ask your GP for the celiac panel.  Like you said, it's covered.  

Re supplements, you can get your levels tested.  Ask your GP.  Most will be covered, some may not.  Common deficiencies in people with celiac are iron, folate, vitamin D, selenium and B vitamins.  Osteoporosis is also common so you may want to consider calcium and magnesium.  I take a women's 50+ multivitamin, magnesium and a calcium D3 combo.

I don't know how old you are, but if you're approaching menopause you may want to ask your doctor about HRT.  It's been shown to be protective against osteoporosis, but it's not for everyone. 

All the best, and again, my apologies for missing your comment.