Don't do what I did and ignore the problem!

[CMCM]

I joined this site in November 2005.  In early 2007 I wrote a long history about my celiac experience.  Here's a link to what I originally wrote.  

 

SO......here is what has happened since then.  I was very very good for a long while.  Despite improvements in health and also learning through my gene test that I definitely have a genetic predisposition to get active celiac disease, I was never sure about it.  Other than the stool test from Enterolab, which is still apparently not a standard diagnosis even today, I have at two various points persuaded my doctor to order a celiac panel.  I never tested positive, although I do wonder if the fact that I was not eating much or even no gluten, perhaps the evidence never made it to the blood panel to be tested.  Perhaps.  A gluten challenge was never suggested, which shows how little my GP knew about all this.  Just take the test was all she knew.

For a lot of years I also ate very low carb (Atkins or Keto type eating), so in doing that I ate no grains at all, including gluten, and that was a good thing for my health.  Perhaps that way of eating kept things under control for the most part.  But not entirely.  There were all these "little" things that kept cropping up.  But once I felt a lot better physically (after about a year), I got increasingly sloppy over the years.  Here and there gluten crept in as a treat.  Mostly I'd get no strong or identifiable reaction that I could definitely link to gluten.  Bloating perhaps.  Feeling slightly sick perhaps, but that was it.  And then eating gluten things got more and more frequent.

This last year with the COVID situation, I got extremely non compliant and pretty much ate gluten with total abandon.  For a few months, I guess I got away with it.  The first thing that happened, although I did not connect it with celiac, was the peripheral neuropathy in my feet.  I now realize it has been present, but barely so, since the mid 1990s.  I didn't even identify it as PN for a long time, but it was an odd sensation.  I first noticed it at the gym while on the treadmill.  It felt like my socks were bunched up in one shoe a bit.  It seemed weird, but I just ignored it.  What I now realize was the beginning of PN stayed like that for 20+ years, mostly in just one foot, mostly something I could mostly ignore.  Then this last year, maybe starting 6 months ago, it suddenly got extremely bad, and was now in both feet.  I still wasn't thinking of celiac, though.  My doctor suggested it was likely due to a compressed disc or some such.  Not much to do about it, just live with it, she said.  

Meanwhile, over this last year I was eating gluten daily, tons of stuff, mostly in the form of cookies, pies, pastries.  My sugar/carb habit was hugely out of control.   My Keto diet had gone out of the window by about April 2020.  I gained some pounds and was bloated as heck.  

It all came to a head at 3 a.m. on Dec. 28.  I was literally jerked awake to an attack of extreme vertigo.  This frightened the heck out of me, I felt terrible, it made me sick, I was vomiting.  I couldn't do anything for at least a day due to dizziness.  It was a bit better the next day, but I could get dizzy easily and I was afraid to turn my head much.  Then on January 10, I felt sick, I vomited right after eating and in fact, food gave me the worst upper abdominal pain I have ever experienced, there was no relief from it in any position, I had no appetite, and could barely drink even water.  Interestingly, as soon as I would throw up, the pain abated for the most part.  Bit by bit, things have improved, but today is 6 days later and I'm still feeling unwell.  I'm still feel a bit light headed here and there but no further vertigo.

I just came back here to see what new information might be out there since I last looked, and when I re-read my personal story written here in 2007, I was stunned to read about a major vertigo attack I had in 2007....it was so much like the one I just had, and it got my attention then just as now.  And then I read about the link of celiac disease to peripheral neuropathy, which had progressed to very bad nerve pain running down my right leg this last week.  I realized I was at the point I had reached before but worse this time, and once again I felt almost no foods at all agreed with me.  

FULL REALIZATION TIME.  This has to be celiac disease.  Despite having no solid diagnosis I don't see how it can be anything else.  I suddenly suspected gluten played a role in all this, and I've had no gluten or other offending foods for 3 days now, and I already see a positive change.  That new leg pain disappeared, the PN is even slightly less than before.  I still feel a low level "almost nausea" all the time, and don't really want to eat much.  I have less energy and don't really feel like doing much.  But overall I can say I feel better.  I've lost a few pounds and am definitely less bloated. 

Since at this point I have so much gluten in my body from this last year of eating it so freely, I decided to take advantage of the situation to order the self test celiac panel in the hopes that it will reveal results that are more accurate than what I always got before when I was tested while eating little to no gluten.  The test will be here in a few days, and I hope at the point where I do the test (after a week with no gluten) that I can still get an accurate test.  I'm frustrated because I called and left a message for my doctor, requesting a full panel celiac test, but haven't had an answer, so I decided to just try the home test, which you do and send send off to be analyzed.  All these years later, I still feel there is not much help to be had from doctors.  I still haven't found a celiac specialist, although I"m looking.  However, I don't hold out  much hope for that.

So here's my plan:   if the celiac test I ordered shows positive results, I will attempt to get my doctor to order an endoscopy.  I would really like a firm diagnosis and I guess the endoscopy is still the gold standard.  That said, this last episode put a real scare into me about other unintended consequences of ignoring this for so long.  I feel like a diagnosis HELPS, at least for me it would help.  At this moment, even if I still get negative test results, I feel like I will finally take this seriously enough and never let gluten knowingly pass my lips again.  I can't believe there is no connection to celiac disease considering things I've experienced.  Yet, I remember I felt like that in 2007, and things still got away from me over time as I felt better.  I don't want that to happen again.  I know I can be compliant and not eat gluten for long periods of time, but this has to be for the rest of my life at this point, I must be determined in that.  I'm 71 now, no delaying this any more.

For those of you who are able to get an early, definite diagnosis, my advice is to take it 100% seriously.  You are fortunate to know early in your life.  This celiac disease is a slippery thing, with the difficulty of diagnosis, ongoing ignorance of doctors generally, the huge complex of possible symptoms all making a firm diagnosis difficult for so many.  As in 2007, I still have to be very proactive by myself and for myself to get the answers I need.

[Scott Adams]

I want to say "welcome back," but you now hold the world record on this forum for the longest member stuck in the denial phase 🙄.

Did you know that because your mother has celiac disease you have a greater than 44% chance of also having it? That is what the latest research shows.

Regarding your home test kit, technically speaking you're supposed to keep eating gluten until the test is taken. With blood tests this means at least 4-6 weeks daily, about a slice of bread. If you don't eat gluten for a week or two leading up to the test, you might still get a positive result, but you also might get a borderline or lower level result, and thus you might remain in this limbo of not being 100% sure.

Given how badly this is affecting you now it's hard for me to recommend anything to you other than a gluten-free diet. I've heard enough. But you may not be 100% convinced, so you will need to decide if you should eat some gluten each day before you take the test.

Let us know how it turns out!

[RebeccaMSL]

I'm not sure I agree with 44% risk if Mom has Celiac. To be diagnosed with Celiac you genetically need HLA-DQ2 and HLA-DQ8. Despite the fact that HLA-DQ2 and HLA-DQ8 are both linked to Celiac, having the mutation doesn't necessarily mean that you'll get the disease. In fact, as many as 40 percent of the U.S. population have these mutations, mostly in people of European descent. Of those who do carry the mutation, only around 1 to 4 percent will go on to develop the disease in their adult years. This is from the Journal of Genetic and Rare Diseases, Feb 2014. Those who inherit 2 copies of the gene mutation (one from each parent) are at the greatest risk and the folks who need to be most vigilent for symptoms of Celiac. I have Celiac and my son has 1 copy of the gene mutation, and has less than a 30% chance of developing Celiac. We had the testing done at reliable well respected Canadian lab.

[CMCM]

It doesn't seem that anyone can say with certainty what the risk is.  I know in my family, it's all HLA-DQ2  (0201).  My mom had two copies of it.  She gave one to each of her 4 children.  So I got one of the DQ2 genes and a different one from my dad that was supposedly linked to gluten sensitivity but not celiac.  Both my son and my daughter got my DQ2 gene.  My brother's son and daughter both got his DQ2 gene as well, and his son got an HLA-DQ8 from his mother....total surprise to her.  Of me and my 3 siblings, my sister and I both seem to have active celiac. My 2 brothers claim they don't have any symptoms, but frankly, from what I've observed I think they really do.  They just refuse to get tested beyond the gene test.  My son got my DQ2 gene from me and a second gene from his dad that is also identified as linked to gluten sensitivity.  He's had a hard time....it first manifested as DH, among other things we didn't realize at the time, but then about 3 or 4 years ago he started getting violently sick from any gluten exposure including cross contamination.  He avoids gluten very very carefully.  My daughter also has the DQ2 gene and a gluten sensitive one, and I believe she also has symptoms that are very identifiable.  It's not severe enough yet so she's not yet ready to totally avoid gluten, although she mostly avoids it as she knows she feels better if she does.  There is so much resistance to recognizing that you might have celiac disease and people just don't want to go "there" unless forced into it.  Yep, that was me.

[CMCM]

Rebecca.....I do have the HLA-DQ2 gene, clearly from my mother, who had two copies of this gene.  I've had issues my entire life, but nowhere near as severe as she did.  I believe her celiac disease became debilitatingly active in the early 1960's after she had a hysterectomy, the surgery must have triggered it as it literally all began then.  She got progressively sicker over a few years, and was really quite close to dying from it at the point where it was diagnosed.  So very little was known about this for so long.  Our family only knew that she had to scrupulously avoid gluten.  My own view of celiac disease and symptoms was defined by what I saw with her, which was extreme.  Sadly, she was ashamed of having it for reasons I don't understand, and she never wanted to admit she had it. 

I myself seemed to have problems with dairy from birth, so that's what I was always focused on, and I largely avoided dairy because it was a guaranteed digestive upset for me.  I've had sporadic episodes of being sick throughout  my life, but again, couldn't definitively connect it to gluten and in fact, I did not at all consider I might actually have active celiac disuease until 2007 when I got weirdly sick and found my way here as I researched for more information.  I got an Enterolab test and gene test, but again, couldn't be sure how conclusive all that was.  Sure, I had the gene, but much of the time I could eat gluten with no apparent reaction and then other times I'd get sick.  My reactions were often somewhat delayed....I almost never got sick immediately after eating it, unlike my mother and also my son, who both got/get instantly and violently sick. 

The times I would try to get answers from doctors about this, due to getting a negative celiac test they would dismiss the possibility that I had it.  So for the most part, I went with that. 

[CMCM]

4 hours ago, Scott Adams said:

I want to say "welcome back," but you now hold the world record on this forum for the longest member stuck in the denial phase 🙄.

Did you know that because your mother has celiac disease you have a greater than 44% chance of also having it? That is what the latest research shows.

Regarding your home test kit, technically speaking you're supposed to keep eating gluten until the test is taken. With blood tests this means at least 4-6 weeks daily, about a slice of bread. If you don't eat gluten for a week or two leading up to the test, you might still get a positive result, but you also might get a borderline or lower level result, and thus you might remain in this limbo of not being 100% sure.

Given how badly this is affecting you now it's hard from me to recommend anything to you other than a gluten-free diet. I've heard enough. But you may not be 100% convinced, so you will need to decide if you should eat some gluten each day before you take the test.

Let us know how it turns out!

Yes....what an embarrassing world record to hold, I'm ashamed of that, but part of my denial was in not wanting to claim I had something I might possibly not have.  Denial is a funny thing, I guess.  Actually, I haven't been totally in denial, it has been in my mind since 2006 or so, and I have hugely avoided gluten for a great deal of the time since then.  Just this last year is when things really went south, not really sure why.  Something triggered what I'm experiencing now....don't know if it would be an overload of gluten over the last yearor if something else triggered it....stress perhaps?  But then, I've been in more stress in past years than this one.  2016 when my mother died (and everything leading up to that) for example.  Terrible year.

As for eating gluten for the test.....I'm honestly afraid to eat it again.  That's probably a good thing, but not good for the test.  I'd really like to get an endoscopy as a true test.

 

[DJFL77I]

Took my Dr 3 months to diagnose me 100 percent after a biopsy..  I went in with stomach pain..  he wasn't looking for Celiac..  the biopsies just found it... Then the blood work confirmed it..

[Scott Adams]

16 hours ago, RebeccaMSL said:

I'm not sure I agree with 44% risk if Mom has Celiac. To be diagnosed with Celiac you genetically need HLA-DQ2 and HLA-DQ8. Despite the fact that HLA-DQ2 and HLA-DQ8 are both linked to Celiac, having the mutation doesn't necessarily mean that you'll get the disease. In fact, as many as 40 percent of the U.S. population have these mutations, mostly in people of European descent. Of those who do carry the mutation, only around 1 to 4 percent will go on to develop the disease in their adult years. This is from the Journal of Genetic and Rare Diseases, Feb 2014. Those who inherit 2 copies of the gene mutation (one from each parent) are at the greatest risk and the folks who need to be most vigilent for symptoms of Celiac. I have Celiac and my son has 1 copy of the gene mutation, and has less than a 30% chance of developing Celiac. We had the testing done at reliable well respected Canadian lab.

Have a look at this recent study:

Quote

The team screened 360 out of a total of 477 first-degree relatives, finding a total of 160 first-degree relatives who were diagnosed with celiac disease, 62% of whom were female. All diagnosed first-degree relatives had positive anti-TTG titers. 

Note that the rate was higher than 44% among female relatives, so it's actually higher.

[CMCM]

9 hours ago, JamesDelaney said:

Took my Dr 3 months to diagnose me 100 percent after a biopsy..  I went in with stomach pain..  he wasn't looking for Celiac..  the biopsies just found it... Then the blood work confirmed it..

So all during this 3 months were you still eating gluten?

[DJFL77I]

2 hours ago, CMCM said:

So all during this 3 months were you still eating gluten?

Ya

[CMCM]

5 hours ago, Scott Adams said:

Have a look at this recent study:

Note that the rate was higher than 44% among female relatives, so it's actually higher.

I think this part in particular was interesting:  Just nine of those diagnosed first-degree relatives had classic symptoms, 97 showed non-classic symptoms, and 42 showed no symptoms.  

So my lifelong expectation that I should react like my mother did in order to suspect celiac disease....was completely wrong!

[CMCM]

So my imaware.com test came in today and was  basically negative. Out of 4 levels of likelihood for celiac, they gave me a "less Likely 5-25%" chance of having celiac disease, although they stated 5%.   So yet again, I have nothing definitive to go on to figure out what is going on.  I'm feeling somewhat better now that I'm 15 days without gluten, definitely better but not completely so.  I'm still having the upper abdominal pain after eating every couple of days, triggered by different things that make no sense and that's my main complaint right now.  I got the pain again this morning after breakfast, eating the same exact thing that caused zero problems a few days ago:  one poached egg on gluten-free toast, a piece of Canadian bacon, green tea.  About 30 min. after eating the pain kicked in and I felt really horrible all day.  I took a Pepcid which may have helped ever so slightly, then a couple of hours later it still hurt so I took an omeprazole.    The pain has become milder by this evening, but I still feel it and just don't feel well and have almost no appetite.  I had so hoped for a clear answer I could go on with, but I'm still where I have always been with this, and I don't really know how to figure out what is going on with me if it's not celiac.  Or at least, if it's celiac it's not evident from a blood test.  I've realized that I can't stand the thought of eating gluten at this point, so I plan to stay away from it.  I also plan to not eat dairy because I know that it has been a lifelong problem and also because Enterolab previously said I test as reactive to casein and therefore should not eat it.  Enterolab also said the same for gluten, although of course those tests are not a definitive diagnosis.   I don't know what else to do except stay away from all gluten and casein/dairy and see how things go.  

Test results are posted below.

[Scott Adams]

It looks like your DPG IgG was just below the cutoff, which could mean gluten sensitivity, and I believe you've had past positive blood test results for celiac disease. Keep in mind that those who are sensitive to gluten but may not have full blown celiac disease yet, could get it later. You have the genetic risk, and it runs in your direct family, which greatly magnifies your risk. Triggers for celiac disease are now being studied such as viruses, age when first introduced to gluten, and gut biome, etc., but it's best to avoid that situation (to me it's kind of like diabetes, where some people avoid the elevated sugar warning signs and don't alter their diet, lose weight, exercise, etc). Keep in mind that ~10% of people have non-celiac gluten sensitivity and should also probably be gluten-free.

It's your call whether or not to go gluten-free, but to me it seems like the safer option.

[CMCM]

No, I've never tested positive on a blood test.  Actually, I've only had one blood test, in 2015, also negative but not surprising since I'd been eating almost no gluten when I got the test and I knew that even then it was likely to be negative.  My "positive" test was via the Enterolab stool test, for what that may be worth.  They claimed they could detect the antibodies up to a year since you last ate gluten, and at the time I did that test, I'd been gluten free for a few months.  I was reviewing all my many old communications with Enterolab related to my test results, and they were fairly adamant that I should avoid gluten.  From my current reading and re-reading of books on this subject, I realize the blood test is not always something you can go on for a definitive diagnosis, and even during an endoscopy & biopsy celiac can be missed so at this point, I don't see any reason to push for that. 

Oh well....at the very least I'm confident that I have gluten sensitivity, and whether what I have is that or celiac, I'm not going to eat gluten again.  Or dairy.  Back in 2011 I ate no gluten or dairy for nearly a year, and then tried a bit of dairy again and it didn't bother me then whereas it gave me problems when I first went dairy and gluten free.  I know for a fact that even if I were to allow dairy into my diet at some future point, it would have to be a small amount and only occasionally.  Dr. Fine at Enterolab wrote me that sensitivity to casein could be just as problematic as gluten sensitivity.  I've had problems with dairy since birth, and I think there is a connection between probably gluten sensitivity and dairy sensitivity....they clearly work together to make everything worse. 

[notme]

if i waited for my doctors to give me a firm diagnosis, i would be dead by now.  almost 11 years later, they finally wrote on my medical records "celiac:  confirmed"  🙄

my blood test was neg, because my gp told me to start the diet without testing first.  i was so underweight that the gi doc didn't want to risk a gluten challenge, and basically told me when they drew blood for the test that it would more than likely come back negative.  when my gi doc could actually *see* the damage when she did my endoscopy, that was good enough for me to start the gluten-free diet.  

my opinion is that once you get a celiac dx, the medical industry can't make bank on you anymore, because the 'cure' is a diet.  not meds or operations.  plus, they can't treat stuff like dh or peripheral neuropathy (ie) or all the myriad of other goodies that come along with untreated celiac.  

i had migraines, but more importantly, i had a 'background' headache that i didn't even know i had till it went away.  and a laundry list of other symptoms that mysteriously went away when i went on the gluten-free diet.

my advice:  stop wasting your time, your positive reaction to the diet is one of the 5 points of diagnosis.   😎 👍

[CMCM]

Well, I'm on day 20 without gluten and have felt much better the last couple of days.  I've scrupulously avoided gluten for 20 days and I see a definite difference in how I feel.  The last time I had the upper abdominal pain was 4 days ago on Thursday the 28th.   I just got a new (to me) book called "Dear Gluten, it's not me, it's you" by Jenny Levine Finke.  It was published in 2020 and has a lot of good info in it that I hadn't seen before, especially regarding both celiac and gluten sensitivity and some of the newer findings about it all.  I'm about half finished with the book,  but just based on the 90 pages I've read so far, I recommend it.  The author also has a website, and she's really into gluten-free recipes.

[Scott Adams]

It's great to hear that you are feeling better! I wrote an intro in that book, and yes, it's got some great info!

[stef-the-kicking-cuty]

I still remember you from back when. I think, I joined the forum in 2004 and after it worked for me I stopped commenting. That was roughly around 2008, so we cross crossed. Anyways, since then I’ve been doing well. However I’ve had something you’ve been describing whenever I’ve had accidental glutening and these last two weeks (which is why I came here today, to look for others, who might have this due to gluten) I had a real emergency situation with muscle weakness, several damaged discs and nerve pain shooting down my leg. Since I’m now a ninja warrior and do have a strong core, this shouldn’t even be an issue. I have 2 doctors now on my page that this is indeed a nerve issue that is exacerbated by eating gluten and the night before this blew out of proportion I actually think I had some gluten. So now I will be scheduled with a celiac rheumatologist and possibly a neurologist to get to the bottom of this.

[stef-the-kicking-cuty]

Also the other thing I wanted to say that while EnteroLab is STILL a test, even if it’s not considered a gold standard. It will still show results and the results are not wrong. It’s be enough for me to stick to the glutenfree diet. That alone together with your reaction to gluten should be enough to convince you. Because why would the test show something, if there is nothing? I mean, it’s not gonna be positive for nothing. And a gold standard just means there are a bunch of head honchos, who have decided at some point that this is the gold standard. It means nothing in my opinion. Go by what EnteroLab says.

[Scott Adams]

Hi Stef, nice to see you back! I'm sorry to hear about the glutening and the never issues. We've go lots of articles here on this topic, so perhaps you can go through some to show to your doctor?

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/ataxia-nerve-disease-neuropathy-brain-damage-and-celiac-disease/

[CMCM]

2 hours ago, stef_the_kicking_cuty said:

I still remember you from back when. I think, I joined the forum in 2004 and after it worked for me I stopped commenting. That was roughly around 2008, so we cross crossed. Anyways, since then I’ve been doing well. However I’ve had something you’ve been describing whenever I’ve had accidental glutening and these last two weeks (which is why I came here today, to look for others, who might have this due to gluten) I had a real emergency situation with muscle weakness, several damaged discs and nerve pain shooting down my leg. Since I’m now a ninja warrior and do have a strong core, this shouldn’t even be an issue. I have 2 doctors now on my page that this is indeed a nerve issue that is exacerbated by eating gluten and the night before this blew out of proportion I actually think I had some gluten. So now I will be scheduled with a celiac rheumatologist and possibly a neurologist to get to the bottom of this.

Hi again!  I think nerve pain and neuropathy is a hard thing to pin down.  In retrospect, I think I "felt" the beginnings of it back in the early 2000's, just on the bottom of one foot, just one spot.  I noticed it while exercising...it kind of felt like the sock in my shoe was a bit crumpled up, but that wasn't it.  Anyhow, things didn't really get annoying until a few years ago.  My doctor (who knew I had gluten issues) didn't connect that at all to gluten, and finally just shrugged and suggested it was a minor disc compression somewhere.  I accepted that more or less because I've had a few ski injuries over the years and figured that might explain it.  Even back in 2005 or so when I joined here, I don't remember nerve pain and neuropathy being something I thought about.  

Anyhow, perhaps like you, I also have some sort of damage that is exacerbated by gluten.  It makes sense, as gluten can cause inflammation.  I'm very active....skiing, biking, and right now I'm in the gym about 5 days a week with a strenuous weight program.  I do feel this is helping to some extent.  For sure it has helped the shooting pain I had down the right side of my right leg back in about November thru January.  That is mostly gone now on a gluten (and all grain) free, dairy free, sugar free diet.  I think healing of nerves is a slow process.  

My doctor (several years ago actually) suggested a prescription vitamin product which targets healing of nerves.  They call it a prescription medical food and it contains L-methylfolate (as Metafolin, a calcium salt of vitamin B9), methylcobalamin (vitamin B12) and pyridoxal 5'-phosphate (vitamin B6). It is a vitamin B supplement.  I first took it (2 tabs a day) for about a year, then tapered it down to one a day for a year, then stopped taking it for a year....it's rather expensive  ($179 for 3 months worth @ 2 per day).  I sort of think it helped a bit, but it never eliminated the neuropathy.  That said, after a year not taking it the neuropathy got considerably worse and I also had the added nerve pain down my leg.  So....I'm back on the prescription vitamin mix since February.  I still can't say it has helped....it could be the vitamins, but it could also be the strict diet I'm on.  Frustrating to never know.  In addition, I'm also taking Benfotiamine and several other things.  Who know what specific thing helps???  Maybe all of it does.

I'll be interested to hear what you and your doctors figure out....please post about it here!

Edited April 12, 2021 by CMCM

[Scott Adams]

Also, I've been taking benfotaimine (B1) and Magnesium Citrate which helped with my neuropathy.

[knitty kitty]

Thiamine and Niacin help peripheral neuropathy!!!  

All the B vitamins work together.  Add high dose (+500 mg) thiamine and 250 mg of niacin (and some riboflavin and biotin).  Those methylated forms of Cobalamine and folate and P5P are available separately online and much cheaper.    

Thiamine and niacin are needed to provide energy and enzymes for everything that goes on in the body.  

 

"Peripheral Neuropathy Due to Vitamin Deficiency, Toxins, and Medications"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4208100/#!po=5.10204

 

[Scott Adams]

I do niacin as well...