Not sure I want to get tested...Can I just not?

[Kasani]

Hi all,

Advanced apologies for the essay-length post. Typing this up has helped me sort through my thoughts a bit. I'm very new to the whole celiac world. I haven't had any testing done so far, but I've got quite the medical history and it feels like celiac is the piece of the puzzle I've been missing all these years.

At 13 I was diagnosed with a stomach ulcer, though I wasn't scoped or anything like that. Just diagnosed based on my complaints about my stomach burning and hurting a lot. And around that time I had white spots appear on my teeth, which have increased since then and look just like celiac teeth discoloration (though I only learned about that within the last week).

At 16 I was diagnosed with type 1 bipolar disorder, which I was hospitalized for a time or two over the years. Meds didn't really help much. Eventually after a good bit of research I wound up weaning off my psych meds and switching to a micronutrient supplement called EmpowerPlus (created by the company Truehope). That was 5 years ago and I've been completely symptom free ever since (thank God), unless I try to reduce the supplement in which case symptoms immediately reappear. So this points to the fact that for some reason my body isn't absorbing the nutrients in needs from food.

At age 19 I was hit with severe chronic tendinitis in both arms which lasted 4 years. My doctors and physiotherapists couldn't figure out why it wouldn't calm down and go away (typical tendinitis usually resolves within 6 months). I also had a flare up of inflammation in my throat during this time that impacted my ability to speak and sing (I'm a piano teacher and musician for my church). Eventually both these issues eased off but they still occasionally flare up.

I'm 28 now and have never had a genuine menstrual cycle to speak of. I didn't have my first period till I was 16 and since then I'm lucky if I have one or two natural periods a year. I take progesterone to trigger it more frequently since my doctors are worried about increased risk of cancer from an absent cycle. Hormone levels have always been super low, with a few rare exceptions. I've been diagnosed with PCOS but I'm thin and don't seem to be insulin resistant. Not surprisingly, I've also been struggling with infertility since getting married 3 years ago and I've had two very early miscarriages.

That sums up the medical history. Now for the more immediate issues.

My dad passed away two years ago (big stressful emotional trigger), and since then I've been dealing with increasing amounts of unexplained nausea. Never bad enough to make me throw up, but enough to make me very uncomfortable and make it hard to function. Also headaches, fatigue, brain fog, and body aches. Thanks to the PCOS I've had a number of ruptured cysts over the years and in the past year the pain levels I associate with cysts getting ready to rupture have increased in frequency--lots of stabbing pains and discomfort.

I've had so much to do with the medical system over the past 15 years than I am extremely jaded about it (I live up in Canada, so at least I don't have to pay an arm and a leg for it, but the level of care is very questionable at times, depending on the doctor you get.) A friend recommended me to a naturopath who does live blood analysis. While I'm not 100% sold on it, some of what he said made sense and he gave me a diet plan to follow that excludes things like dairy and gluten. I've followed it for about a month, and it's like night and day. All my nausea and pain went away. It's incredible.

But then I tried adding diary and gluten back in. Good grief. I can't touch anything cow-diary now without IMMEDIATE nausea that lasts anywhere from an hour to the rest of the day (Interestingly, goats milk is totally fine). And anything with gluten causes what I term "PCOS pain" like my cysts are flaring and about to rupture, along with stomach upset and digestive discomfort. I seem to be getting increasingly sensitive to smaller amounts of diary and gluten as well, with increasingly intense, longer lasting reactions to it. So I'm trying to just keep avoiding it (though it's so far been trial and error as I'm so new to this).

My mom has a cousin who was diagnosed with celiac 10 years ago. And after doing further reading, we're starting to think my dad was very likely an undiagnosed celiac. A lot of his health problems overlapped with it, and the heart condition he died from has a known connection to longterm untreated celiac.

With all of this in mind, I do intend to keep following a gluten free and dairy free diet. But I can't exactly get tested for celiac now that I'm already off gluten and I have NO desire to attempt a gluten challenge. No way. It's not worth that level of pain and discomfort. But it feels wrong somehow to claim I'm celiac without an official diagnosis... I realize it could be something like non-celiac gluten intolerance and dairy sensitivity. But in the big picture, does it really matter? Either way I can't eat gluten or diary now without being in a world of misery. It's not a big deal when I'm eating at home. It's just a challenge if I'm visiting people or eating out. In which case it's most convenient to just say "I've discovered I'm celiac" and leave it at that. But is it ok to do that?? I don't know.

If you've made it this far, I appreciate your patience! Any thoughts or recommendations are welcome. I do plan to reach out to one of my doctors and ask their opinion too. I'm just getting my mental ducks in order before I jump down that rabbit hole. 😮‍💨 I hate dealing with the medical system.

[trents]

Welcome to the forum, Kasini! The only thing I would suggest would be to consider getting a genetic test done to see if you carry one or more of the genes associated with celiac disease. About 40% of the general population will carry one or more of the genes but only about 1% will develop active celiac disease. So, having the genes doesn't equate to having active celiac disease but not having them would push you in the direction of NCGS (Non Celiac Gluten Sensitivity) for which there is no test available yet. Celiac disease must first be ruled out. NCGS is 10x more common than celaic disease. On the other hand, if you do have the genes it is likely, in view of your symptoms, that you do have celiac disease and I would just claim it. If you don't have the genes, you already know that gluten causes you problems, so just say to people, "I am gluten sensitive and need to avoid it." That way, you don't have to struggle as much with the ethical dilemma of whether or not it is valid to tell people you have celiac disease when you haven't had any sort of testing.

[Scott Adams]

Given the severity of your symptoms I can understand your reluctance to eat gluten again to be tested. I don't think it matters too much to have an official diagnosis in your case, but a positive genetic test that @trents mentioned would at least let you know that celiac disease is a likely culprit, especially if your symptoms improve greatly on a gluten-free diet. Speaking of which , I must assume that you've seen some symptom improvement while on a gluten-free diet, otherwise you would not be so reluctant to add gluten back to your diet, however you did not specifically describe how well the diet is working for you.

[Kasani]

25 minutes ago, Scott Adams said:

Given the severity of your symptoms I can understand your reluctance to eat gluten again to be tested. I don't think it matters too much to have an official diagnosis in your case, but a positive genetic test that @trents mentioned would at least let you know that celiac disease is a likely culprit, especially if your symptoms improve greatly on a gluten-free diet. Speaking of which , I must assume that you've seen some symptom improvement while on a gluten-free diet, otherwise you would not be so reluctant to add gluten back to your diet, however you did not specifically describe how well the diet is working for you.

Yeah, what both you and Trents have said makes a lot of sense. I think I will look into the genetic test. As far as the diet goes, its made huge improvements when I'm following it---no nausea, almost no pain, more energy and no brain fog. So that's fantastic and I'm really happy about it! Just not so happy about how immediately terrible I feel when I accidentally eat something I shouldn't now. 😅

[Scott Adams]

This article has some detailed information on how to be 100% gluten-free, so it may be helpful: