Diagnosed with celiac a little too soon

[Ruu]

Hello everyone!

I just got done seeing the doctor today and I'll be honest... I came in prepared to advocate for myself; I had facts, sources, and Mayo Clinic's diagnostic flow charts ready. However, my doctor took one look at my HLA-DQ8 variant and TTG IGG of 15 (less than 6 being normal), listened to my symptoms, and said, "I'm certain you have celiac disease." My TTG IGA was normal, DGP IGG & IGA were also normal (highest level was 5). I was asked why I was continuing to eat gluten after seeing my results (it should be noted I am a medical professional, which is why he asked me this), to which I responded that I needed to be certain of this life sentence and would like a gastroenterology referral. Thankfully, he obliged, in addition to sending me to rheumatology.

I've had migraines my whole life, but they became very frequent in the past year. I was sent to neurology and given medications. I also had myofacial pain (burning, jaw hurting) but my MRI was clear. I've been eating mostly a low carb diet for the past three years, so I thought maybe it wasn't working for me and began to eat more carbs this year. I started having very low tolerance to caffeine (anxiety, heart palpitations, couldn't sleep) and alcohol (I became very nauseous and threw up for hours after 1 drink). I developed joint paint in my hands and burning muscle plain in my arms and sometimes my legs. I've had calf/leg pain on one leg for months, and hip pain. Three doctors said I may have an inflammatory condition, but on paper, my health and general labs looked great. Well, other than having a vitamin D deficiency and low ferritin of 15 (iron deficiency without anemia).

My health deteriorated greatly in the past year, with most of my symptoms developing and getting worse in the past 3 months. When I finally looked into possible inflammatory diseases, I got a genetic test for celiac which came back positive with HLA-DQ8. So I started eating gluten on a daily basis, got tested at 8 weeks, but only my TTG-IGG was elevated. During this gluten challenge, I developed loose stools, stomach cramps, and I now have nausea after every meal even if it does not have gluten (that I know of). I also got a tiny weird bump/blister on my finger, but its not itchy and it doesn't look like the red angry pictures of dermatitis herpetiformis.

I want to share this here in case anyone with similar symptoms or a similar blood test result is looking for answers. I also would like to hear what anyone has to say... I may work in health care, but celiac disease is not my specialty (although I did study it, but I was taught incorrectly that celiac always came with GI symptoms). Is my doctor right? Is that enough to diagnose me with celiac disease?

[trents]

You may also have non celiac gluten sensitivity. Symptoms are a lot the same but there is currently no test for it so first you rule out celiac disease. The rememdy is also the same, namely, abstinence from glute for a lifetime. 

[Scott Adams]

I think the combination is the DQ8, your symptoms, and you 2x the level for CD on your tTg test tells me that your doctor is probably correct, but if you’re still not certain go for the endoscopy for confirmation. Be sure to keep eating gluten daily until all tests are completed.

[Ruu]

20 minutes ago, Scott Adams said:

I think the combination is the DQ8, your symptoms, and you 2x the level for celiac disease on your tTg test tells me that your doctor is probably correct, but if you’re still not certain go for the endoscopy for confirmation. Be sure to keep eating gluten daily until all tests are completed.

Hi Scott; thank you for taking your time to read and respond to so many posts. I will keep eating gluten and hopefully I get an endoscopy sooner than later. 🤢 (On an unrelated note, I am originally from Santa Rosa; its nice to meet others from there.)

[Ruu]

1 hour ago, trents said:

You may also have non celiac gluten sensitivity. Symptoms are a lot the same but there is currently no test for it so first you rule out celiac disease. The rememdy is also the same, namely, abstinence from glute for a lifetime. 

I was thinking it could be that as well; though I'm not sure it would cause elevated TTG-IGG. In any case, I'll keep it in mind and go gluten free after the endoscopy regardless of what the results are. Thanks, Trents!

[Onegiantcrunchie]

20 hours ago, trents said:

You may also have non celiac gluten sensitivity. Symptoms are a lot the same but there is currently no test for it so first you rule out celiac disease. The rememdy is also the same, namely, abstinence from glute for a lifetime. 

Genuine question, if it's non coeliac would there be antibodies?? Or is TTG IGG not the antibodies? *confused*

Ruu, it does sound like coeliac to me if you've had a positive antibodies result. Not sure what else it could be? The endoscopy is just the 'gold standard', the way it's established to be done, and like final confirmation as far as I know.

You mentioned vitamin D deficiency - this may interest you https://www.bbc.co.uk/programmes/articles/4mbCTBjhnt8VLmMKwQz3RrS/the-big-vitamin-d-experiment

I found it a couple years ago when my vit D was low, I chose the salmon option and my vitamin D was back at healthy levels within I think 3 weeks.

I hope you feel better!

[Ruu]

2 hours ago, Onegiantcrunchie said:

Genuine question, if it's non coeliac would there be antibodies?? Or is TTG IGG not the antibodies? *confused*

Ruu, it does sound like coeliac to me if you've had a positive antibodies result. Not sure what else it could be? The endoscopy is just the 'gold standard', the way it's established to be done, and like final confirmation as far as I know.

You mentioned vitamin D deficiency - this may interest you https://www.bbc.co.uk/programmes/articles/4mbCTBjhnt8VLmMKwQz3RrS/the-big-vitamin-d-experiment

I found it a couple years ago when my vit D was low, I chose the salmon option and my vitamin D was back at healthy levels within I think 3 weeks.

I hope you feel better!

I was thinking along those lines as well and started looking up specificity of the test. According to Quest Labs (which is where I got it done), they state the TTG-IGG has a 95% specificity for celiac disease; this means 5% can be a false positive. Its not exactly the answer to your comment... in my practice, if a patient says they feel better without gluten, then that is all that is needed to tell them to avoid it.

Thanks for the article on vitamin D! I am going to have to share it with others.

[Ruu]

I just googled this real quick: https://www.beyondceliac.org/celiac-disease/non-celiac-gluten-sensitivity/gluten-sensitivity-testing/

Its concurrent with what I've been taught... even testing for wheat or other allergies is iffy and is used as a guide or starting point rather than the answer.

[Wheatwacked]

On 9/1/2021 at 6:18 PM, Ruu said:

vitamin D deficiency

The RDA for vitamin D is based solely on maintaining the minimum serum level >20 ng/ml a to avoid rickets in children and osteomalacia in adults ignoring other benefits of vitamin D. From the Journal of the National Cancer Institute:

Quote

In this cohort analysis, a 25(OH)D increment of 25 nmol/L [10 ng/ml] was associated with a 17% reduction in total cancer incidence, a 29% reduction in total cancer mortality, and a 43% and 45% reduction in incidence and mortality, respectively, of digestive-system cancers. A further risk reduction is possible for even higher 25(OH)D increments, but larger increments were beyond the range of our data.   Prospective Study of Predictors of Vitamin D Status and Cancer Incidence and Mortality in Men | JNCI: Journal of the National Cancer Institute | Oxford Academic (oup.com)   https://academic.oup.com/jnci/article/98/7/451/2522019?login=true

 

[Ruu]

I just want to update for anyone who is interested:

My gastro said that with elevated ttg-igg, presence of genetic factors for celiac, and current symptoms make him 95% confident I have celiac disease. I am scheduled for an endoscopy where he is going to take ~16 samples and observe the damage. I feel I am in good hands with someone as thorough as he is. He also said its possible to not find much, which would mean I am in the earlier stages of celiac.

I hope this helps someone out there.

[Catherine Mc]

11 minutes ago, Ruu said:

I just want to update for anyone who is interested:

My gastro said that with elevated ttg-igg, presence of genetic factors for celiac, and current symptoms make him 95% confident I have celiac disease. I am scheduled for an endoscopy where he is going to take ~16 samples and observe the damage. I feel I am in good hands with someone as thorough as he is. He also said its possible to not find much, which would mean I am in the earlier stages of celiac.

I hope this helps someone out there.

Hi, this is very helpful to me. Thanks for sharing. A year and a half ago I got similar celiac testing results back, positive genetics, and high tTG IgG (17) but normal tTG IgA and normal blood serum levels. Functional med Dr. immediately said celiac, but I had a hard time believing it because I don't have the classic digestive symptoms. I was also hesitant to go gluten-free because I have other food sensitivities that already limit my diet greatly. I am salicylate intolerant (I get hives among other symptoms).  I also don't do well with oxalates (had high markers on my OAT test and I think they were causing joint pain/stiffness). I'm now wondering if being celiac could have been the cause of my other issues and is there any hope that they might resolve if I were to eat gluten-free? I've been eating gluten-free off and on for about a year because it's so hard, and I keep feeling unsure because there is so little info about an isolated elevated tTG IgG test result. Slowly but surely, I've started to feel like I probably am celiac and your post has helped. Thx! 

 

[Onegiantcrunchie]

47 minutes ago, Ruu said:

I just want to update for anyone who is interested:

My gastro said that with elevated ttg-igg, presence of genetic factors for celiac, and current symptoms make him 95% confident I have celiac disease. I am scheduled for an endoscopy where he is going to take ~16 samples and observe the damage. I feel I am in good hands with someone as thorough as he is. He also said its possible to not find much, which would mean I am in the earlier stages of celiac.

I hope this helps someone out there.

Good luck, we're here to support you!

[Ruu]

2 hours ago, Catherine Mc said:

Hi, this is very helpful to me. Thanks for sharing. A year and a half ago I got similar celiac testing results back, positive genetics, and high tTG IgG (17) but normal tTG IgA and normal blood serum levels. Functional med Dr. immediately said celiac, but I had a hard time believing it because I don't have the classic digestive symptoms. I was also hesitant to go gluten-free because I have other food sensitivities that already limit my diet greatly. I am salicylate intolerant (I get hives among other symptoms).  I also don't do well with oxalates (had high markers on my OAT test and I think they were causing joint pain/stiffness). I'm now wondering if being celiac could have been the cause of my other issues and is there any hope that they might resolve if I were to eat gluten-free? I've been eating gluten-free off and on for about a year because it's so hard, and I keep feeling unsure because there is so little info about an isolated elevated tTG IgG test result. Slowly but surely, I've started to feel like I probably am celiac and your post has helped. Thx! 

 

I felt the same way as you, questioning if I really have it. The longer I keep eating gluten, though, the more symptoms (and worse) I have.

Its hard to say what will resolve on a gluten free diet, but I would say for most people a lot of issues resolve or improve. Are you planning to see a gastroenterologist? I recommend ruling celiac out/in if possible.

Edited September 13, 2021 by Ruu
Adding a question/encouragement

[BlackShoesBlackSocks]

I can understand your hesitation, I've felt the same way when it comes right down to it considering that it really is a life sentence.

Here's the thing, l'm wondering if his wording betrayed what he may have been thinking in more technical terms-you may not actively have celiac disease right now but with the genetic haplotype, it's almost certain that you would develop it if you were to continue without a gluten free diet?

l know it sucks to hear, l'm no expert and not even a medical professional but l do know that DQ8 is of particular concern in developing active celiac disease.

BUT, right now you may only have NCGS and have no active disease, so eating gluten free may help you  to prevent any long term damage.

It's just that there isn't bloodwork to verify non-celiac so if he can take the other results into account and make an educated guess based on the other factors he may have decided to do so.

[Ruu]

15 hours ago, BlackShoesBlackSocks said:

I can understand your hesitation, I've felt the same way when it comes right down to it considering that it really is a life sentence.

Here's the thing, l'm wondering if his wording betrayed what he may have been thinking in more technical terms-you may not actively have celiac disease right now but with the genetic haplotype, it's almost certain that you would develop it if you were to continue without a gluten free diet?

l know it sucks to hear, l'm no expert and not even a medical professional but l do know that DQ8 is of particular concern in developing active celiac disease.

BUT, right now you may only have NCGS and have no active disease, so eating gluten free may help you  to prevent any long term damage.

It's just that there isn't bloodwork to verify non-celiac so if he can take the other results into account and make an educated guess based on the other factors he may have decided to do so.

Oh, the gastroenterologist explained it very well. There is a progression of celiac disease and in the earlier stages there's little to no damage, so it tends to get missed and people are misdiagnosed until later. My hesitation was with my general doctor who just went ahead and told me I had it without consulting a gastro first.

 

[Scott Adams]

Oh, and you really don’t want to reach the villi damage stage if you can avoid it!

[Ruu]

10 hours ago, Scott Adams said:

Oh, and you really don’t want to reach the villi damage stage if you can avoid it!

Agreed! Is there a test that detects early celiac before it gets to that point?

[Wheatwacked]

On 9/1/2021 at 6:18 PM, Ruu said:

During this gluten challenge, I developed loose stools, stomach cramps,

That's why they call it the "gluten challange". You've passed enough medical tests to admit you to the 1% Club. As I understand, as a nonprofessional, from a medico-legal point you have an official diagnosis and you now have a pre-existing condition. It is up to you to decide if the food you choose to eat is more important than your health.

I made that mistake when I was 25 and regret it. My life would have been better had I paid attention and not waited until I was 63 to come out of denial. Admittedly, if you start GFD now you will never know how bad your brain fog would become. I recomend in addition to the articles here that you read Wheat Belly: Total Health and Eat to Live for background research.

You are not giving up a way of life, just not eating some foods. As if you moved to another country where the local cuisine if different from your culture. There is culture shock, you may go through a mourning period. Lot's of vitamin D will help. Get your plasma up to 70 nmole/ml. Strive to eat 2.4 mg Potassium per calorie (RDI). I've found that if I do, I also exceed the RDA of of the other 23 vitamins and minerals I track. Calcium, Niacin, Vitamin A, E and D are still a problem for me, though.

[trents]

8 hours ago, Ruu said:

Agreed! Is there a test that detects early celiac before it gets to that point?

You have had that test and hopefully caught the disease at an early stage before you have experienced prolonged inflammation/damage to the small bowel villi and the health problems that ensue from that.

If you want confirmation that you have celiac disease or not, you would need to go to the next step of diagnosis which is the endoscopy/biopsy. This is also used to distinguish celiac disease from NCGS. But with your elevated tTG-IGA most likely you have celiac disease. The litany of life-long symptoms you presented in your original post certainly also points to celiac disease and the biopsy would evaluate the level of damage to your villi. 

To answer one of your other questions: No, people with celiac disease do not necessarily experience significant GI distress. We call that "silent" celiac disease. I was one. But with time and inattention to gluten in the diet, GI symptoms may manifest. You say more than once, "but I was taught . . . ". Are you a doctor? Sounds like your training in this area simply reflects outdated and common misconceptions about celiac disease.

Edited September 20, 2021 by trents

[Ruu]

2 hours ago, trents said:

You have had that test and hopefully caught the disease at an early stage before you have experienced prolonged inflammation/damage to the small bowel villi and the health problems that ensue from that.

If you want confirmation that you have celiac disease or not, you would need to go to the next step of diagnosis which is the endoscopy/biopsy. This is also used to distinguish celiac disease from NCGS. But with your elevated tTG-IGA most likely you have celiac disease. The litany of life-long symptoms you presented in your original post certainly also points to celiac disease and the biopsy would evaluate the level of damage to your villi. 

To answer one of your other questions: No, people with celiac disease do not necessarily experience significant GI distress. We call that "silent" celiac disease. I was one. But with time and inattention to gluten in the diet, GI symptoms may manifest. You say more than once, "but I was taught . . . ". Are you a doctor? Sounds like your training in this area simply reflects outdated and common misconceptions about celiac disease.

No, I am not a doctor. The information I was taught about celiac is accurate, but it wasn't enough information. It was a brief lesson on it.

If there is no damage in a biopsy, however, wouldn't this mean that people are walking around undiagnosed? It seems to be that in order to be diagnosed with celiac, is must show on a biopsy. I'm in the US, by the way.

[Ruu]

9 hours ago, Wheatwacked said:

That's why they call it the "gluten challange". You've passed enough medical tests to admit you to the 1% Club. As I understand, as a nonprofessional, from a medico-legal point you have an official diagnosis and you now have a pre-existing condition. It is up to you to decide if the food you choose to eat is more important than your health.

I made that mistake when I was 25 and regret it. My life would have been better had I paid attention and not waited until I was 63 to come out of denial. Admittedly, if you start GFD now you will never know how bad your brain fog would become. I recomend in addition to the articles here that you read Wheat Belly: Total Health and Eat to Live for background research.

You are not giving up a way of life, just not eating some foods. As if you moved to another country where the local cuisine if different from your culture. There is culture shock, you may go through a mourning period. Lot's of vitamin D will help. Get your plasma up to 70 nmole/ml. Strive to eat 2.4 mg Potassium per calorie (RDI). I've found that if I do, I also exceed the RDA of of the other 23 vitamins and minerals I track. Calcium, Niacin, Vitamin A, E and D are still a problem for me, though.

Thank you for sharing your experience. No, I do not think foods are more important than my health. I can't wait to start eating gluten free, but I'm still waiting for my endoscopy. I'm in my early thirties now and I just hope there hasn't been any permanent damage (I doubt that since I've been diagnosed with osteoarthritis at 19, and no one cared to look into why that was).

[trents]

18 minutes ago, Ruu said:

No, I am not a doctor. The information I was taught about celiac is accurate, but it wasn't enough information. It was a brief lesson on it.

If there is no damage in a biopsy, however, wouldn't this mean that people are walking around undiagnosed? It seems to be that in order to be diagnosed with celiac, is must show on a biopsy. I'm in the US, by the way.

Actually, that is not true, strictly speaking. There are two primary manifestations of celiac disease, classically speaking that is. One is small bowel lining inflammation/villi blunting and the GI distress that typically (but no always) accompanies it. The other is dermatitis herpetiformis (DH). Typically, people have one or the other of these classic manifestations but not both, though some do have both. What we are learning over time is that celiac disease has a lot more variability to it in it's expression than was originally thought. It sometimes defies our neat diagnostic categories. For example, many or most have GI distress with celiac disease but some don't, at least in the initial stages.

You say you are not a doctor but a medical professional. What do you do?

Edited September 20, 2021 by trents

[Ruu]

11 minutes ago, trents said:

Actually, that is not true, strictly speaking. There are two primary manifestations of celiac disease, classically speaking that is. One is small bowel lining inflammation/villi blunting and the GI distress that typically (but no always) accompanies it. The other is dermatitis herpetiformis (DH). Typically, people have one or the other of these classic manifestations but not both, though some do have both. What we are learning over time is that celiac disease has a lot more variability to it in it's expression than was originally thought. It sometimes defies our neat diagnostic categories. For example, many or most have GI distress with celiac disease but some don't, at least in the initial stages.

You say you are not a doctor but a medical professional. What do you do?

I sent you a DM about my profession, I hope that's okay.

I think phrased my question poorly. My gastroenterologist said that sometimes there is no damage shown in the biopsy (even with a positive blood analysis) which could mean early stage celiac, but this is not an actual diagnosis? Now that I am phrasing it this way it sounds like a question I can ask him. 

[trents]

Ruu, so I understand you to say that you have a biopsy coming up soon? If it is positive then you have a firm answer. If not, the only other course of diagnostic action would be to commit to going gluten free and see if your symptoms improve over a period of weeks or months. If they don't, gluten is not the problem and you can look elsewhere. Just take one thing at a time.

[Onegiantcrunchie]

3 hours ago, Ruu said:

I sent you a DM about my profession, I hope that's okay.

I think phrased my question poorly. My gastroenterologist said that sometimes there is no damage shown in the biopsy (even with a positive blood analysis) which could mean early stage celiac, but this is not an actual diagnosis? Now that I am phrasing it this way it sounds like a question I can ask him. 

Hi Ruu. The endoscopy/biopsy specifically looks for damage - the gluten causes the damage. That's why they have you do the gluten challenge before the biopsy, because if you cut gluten out before, there's a chance that any damage there was could heal before the biopsy, leaving nothing to find. So, a coeliac case might look like a non-coeliac.

I'm guessing your doctor was talking about the fact that when they biopsy, they're only taking one little part, and that part may happen to be a part that doesn't show damage, when other parts that they haven't taken, do. I think that's why your doctor said this wouldn't be an actual diagnosis - it's just not certain enough? I hope I worded that properly!