Blood work very positive for Celiac, but I had no idea for 30 years

[SammieBoo]

Hello Everyone! 
 

Over the last year I’ve noticed that my body has become a lot more sensitive to daily life, my stress levels were high, I had an increase in migraines, stomach pain, random vomiting and all sorts of bowel movement issues. I thought this was simply due to a change in my lifestyle and surroundings. I had moved that year to a new town and wasn’t coping well with the change. I was also seeing my doctor regularly in an attempt to figure out issues I’d had with PCOS and absent periods for my entire pubescent life. I’m also obese and struggling to lose weight, always have, so again, I figured my list of symptoms was surely do to a rapid amount of changes I was undergoing… and didn’t think much of it. 
 

about 2 months ago however, I started to experience more intense symptoms… extreme nausea that was constant… nothing I would take could help to calm it, I wouldn’t have a bowel movement for 3 days or more, then intense diarrhea. Whenever I wasn’t feeling sick I’d crave chocolate and strange foods…I did so much research and narrowed my symptoms down to 2 potential issues - Cancer, or Celiac.  I finally couldn’t take it and told my doctor who promptly sent me for blood work and abdominal X-Rays… part of me thought for sure the answer wouldn’t be that easy, but turns out a week later I get a call from my doctor informing me that both tests they did came back “very positive” for potential celiac. 
 

I had no idea… but when I think about the health concerns I’ve struggled with from childhood until now (I’m 30) I’m baffled that every symptom or ailment I’ve struggled with leads me right to Celiac. 
 

What I found strange though, is how I had no idea… the more research I’m doing, the more I realize how common it is for so many celiac patients are considered “Silent celiac” and go undiagnosed their entire lives. My mother actually died of Colon cancer 20 years ago, at age 37… almost unheard of at that age to die from such a cancer. She too struggled with many of these symptoms in life… I wouldn’t be surprised if celiac caused her cancer, and a lack of medical understanding caused her premature death. I’m so surprised… and heart broken. But also so grateful my case was caught early enough to potentially save my life. 
 

I go for a biopsy in a month to confirm my diagnosis… I’m counting down the days and minuets and can’t tell you how excited I have to gut gluten out of my life for GOOD. 

 

Any and all support and encouragement is welcome. Share your story… this is new and overwhelming for me.  

[trents]

Welcome to the forum, Sammie!

It typically takes many years to arrive at a celiac diagnosis. There is an appalling amount of ignorance in the medical community about celiac disease, though there are signs that there is more awareness of this health issue, especially among more recent medical school graduates.

One word of caution is in order. Don't start the gluten free diet until your endoscopy/biopsy is done or you may invalidate the results.

[SammieBoo]

23 minutes ago, trents said:

Welcome to the forum, Sammie!

It typically takes many years to arrive at a celiac diagnosis. There is an appalling amount of ignorance in the medical community about celiac disease, though there are signs that there is more awareness of this health issue, especially among more recent medical school graduates.

One word of caution is in order. Don't start the gluten free diet until your endoscopy/biopsy is done or you may invalidate the results.

Thank you so much for the welcome! Yes I’ve done all the reading and my doctor also advised me of this! Rest assured I’m still very much consuming gluten. 
 

I’m just praying I’ll start to see my life improve once i get confirmed and start the diet. I don’t even know what to expect but I’m so excited I have anxiety. 

[Scott Adams]

Welcome to the forum! If you can get a copy of your celiac positive blood test results and wish to share them here it could provide more insight to your situation. In Europe if your antibody tests are 10x the level for celiac disease they are making the diagnosis without a biopsy. I bring this up because of your family history, and to me it would seem prudent for your doctor to accelerate your diagnosis so you can begin a gluten-free diet ASAP.

[SammieBoo]

6 hours ago, Scott Adams said:

Welcome to the forum! If you can get a copy of your celiac positive blood test results and wish to share them here it could provide more insight to your situation. In Europe if your antibody tests are 10x the level for celiac disease they are making the diagnosis without a biopsy. I bring this up because of your family history, and to me it would seem prudent for your doctor to accelerate your diagnosis so you can begin a gluten-free diet ASAP.

Very interesting. I’m actually going sooner than expected for my biopsy. In a week exactly now. My tTG igA tested at 50, and there’s another test that I can’t recall that tests for destruction of cells in the body I think… and I was told it’s off the charts too. 
 

that’s what I know at this point! 

[trents]

21 minutes ago, SammieBoo said:

Very interesting. I’m actually going sooner than expected for my biopsy. In a week exactly now. My tTG igA tested at 50, and there’s another test that I can’t recall that tests for destruction of cells in the body I think… and I was told it’s off the charts too. 
 

that’s what I know at this point! 

Sammie, the 50 score is not very meaningful unless we have reference ranges (what is normal and what is high) to gauge it by. Different labs use different reference ranges.

[yuluyouyue]

I am glad you might have a diagnosis that will finally bring you on the right track with your health. I also want to add that celiac disease does not increase the risk of colon cancer or at least I am not aware of such studies. It does increase the risk of small intestine lymphoma, but that one is rare to begin with. I am pointing this out because I have seen this claim on the forum before (even that it increases the risk of CRC 2000 times!) which does not seem to be true. 

[SammieBoo]

21 minutes ago, yuluyouyue said:

I am glad you might have a diagnosis that will finally bring you on the right track with your health. I also want to add that celiac disease does not increase the risk of colon cancer or at least I am not aware of such studies. It does increase the risk of small intestine lymphoma, but that one is rare to begin with. I am pointing this out because I have seen this claim on the forum before (even that it increases the risk of CRC 2000 times!) which does not seem to be true. 

That’s absolutely fair! I definitely don’t claim to be an expert, it might have nothing to do with her diagnosis. I just wondered more than anything. I appreciate the information! That settles my mind a bit. 

[Wheatwacked]

Lots of money being spent to keep you eating gluten. I think I read that wheat is the #1 traded comodity in the world. Gluten containing foods are often "fortified". Just eating a gluten free Standard American Diet will solve your Celiac symptoms, but also open you to dietary vitamin and mineral deficiencies that can mimic your Celiac symptoms.

[AMessenger]

My celiac blood test came back off the charts at 126!! Gastroenterologist said endoscopy wasn't even needed to confirm!  I too was undiagnosed for 27 years (I never went to the doctor except when I was pregnant, and obviously gluten sensitivity isn't tested on a regular basis).  After TWO DAYS on the gluten-free diet I felt 100% better and have since (it's only been a little over 2 months) gained back the nearly 15 lbs I had lost since the beginning of the year.  I feel like my old self again for the most part.  I'm wondering though, if anyone can shine some light, are there other common lingering symptoms of celiacs? Even if you are diligent with your diet?  I am still having a lot of anxiety and am very fatigued even though I sleep pretty well.

[LovintheGFlife]

On 11/17/2021 at 10:12 PM, SammieBoo said:

Hello Everyone! 
 

Over the last year I’ve noticed that my body has become a lot more sensitive to daily life, my stress levels were high, I had an increase in migraines, stomach pain, random vomiting and all sorts of bowel movement issues. I thought this was simply due to a change in my lifestyle and surroundings. I had moved that year to a new town and wasn’t coping well with the change. I was also seeing my doctor regularly in an attempt to figure out issues I’d had with PCOS and absent periods for my entire pubescent life. I’m also obese and struggling to lose weight, always have, so again, I figured my list of symptoms was surely do to a rapid amount of changes I was undergoing… and didn’t think much of it. 
 

about 2 months ago however, I started to experience more intense symptoms… extreme nausea that was constant… nothing I would take could help to calm it, I wouldn’t have a bowel movement for 3 days or more, then intense diarrhea. Whenever I wasn’t feeling sick I’d crave chocolate and strange foods…I did so much research and narrowed my symptoms down to 2 potential issues - Cancer, or Celiac.  I finally couldn’t take it and told my doctor who promptly sent me for blood work and abdominal X-Rays… part of me thought for sure the answer wouldn’t be that easy, but turns out a week later I get a call from my doctor informing me that both tests they did came back “very positive” for potential celiac. 
 

I had no idea… but when I think about the health concerns I’ve struggled with from childhood until now (I’m 30) I’m baffled that every symptom or ailment I’ve struggled with leads me right to Celiac. 
 

What I found strange though, is how I had no idea… the more research I’m doing, the more I realize how common it is for so many celiac patients are considered “Silent celiac” and go undiagnosed their entire lives. My mother actually died of Colon cancer 20 years ago, at age 37… almost unheard of at that age to die from such a cancer. She too struggled with many of these symptoms in life… I wouldn’t be surprised if celiac caused her cancer, and a lack of medical understanding caused her premature death. I’m so surprised… and heart broken. But also so grateful my case was caught early enough to potentially save my life. 
 

I go for a biopsy in a month to confirm my diagnosis… I’m counting down the days and minuets and can’t tell you how excited I have to gut gluten out of my life for GOOD. 

 

Any and all support and encouragement is welcome. Share your story… this is new and overwhelming for me.  

HI @SammieBoo,

Welcome to this forum. I hope your symptoms improve and you find relief soon. I struggled like you for many years with indigestion, bloating, cramps, and constipation. All that improved two months after switching to a gluten-free diet. I am sure your outcome will be similar, if you are confirmed to celiac disease. It's a shame that many physicians are ignorant about this condition. My PCP even told me he's "not convinced" celiac disease is "even a thing". So much for modern medical science!

[SammieBoo]

35 minutes ago, LovintheGFlife said:

HI @SammieBoo,

Welcome to this forum. I hope your symptoms improve and you find relief soon. I struggled like you for many years with indigestion, bloating, cramps, and constipation. All that improved two months after switching to a gluten-free diet. I am sure your outcome will be similar, if you are confirmed to celiac disease. It's a shame that many physicians are ignorant about this condition. My PCP even told me he's "not convinced" celiac disease is "even a thing". So much for modern medical science!

Wow that makes me really upset to hear. Doctors… the ones who are supposed to be so educated and all knowing… I swear it’s a generational ignorance and ego that comes with the time. That’s the only pattern I’ve noticed in my health care advice. 🤷🏼‍♀️ I trust my doctor… he’s worked with me for the last year, monthly appointments… constantly troubleshooting and he respects my thoughts and takes my concerns seriously. I’m lucky and so grateful. 

[AlwaysLearning]

Congratulations on finally getting some answers!!!!

Reading your story reminded me of when I finally got my answer to years of asking what was wrong with me. Being female and seeking out possible causes for aches and pains during the beginning of the opioid crisis was a double whammy of doctors automatically dismissing me as being either a hysterical female or a seeker of drugs. It was rough. Actually having a medical problem makes you acutely aware of just how lousy our health care system is. I am so sorry to hear that your mom got lost in it and that she was taken from you so young.

But now you can get better! And there is one positive to getting your diagnosis after suffering some. It makes it a ton easier to never want to go back to consuming gluten again. I remember the first time a plate of freshly-baked chocolate chip cookies was placed in front of me and I was all like "not a chance". lol

Make sure to do your homework and learn all about the hidden sources of gluten. I know there are posts here in the forum. Learn how to de-gluten your kitchen. Oh, and learn what other foods celiacs are likely to also react to, not because you have a sensitivity to them as well so much as your system is so amped up that it gets confused by similar proteins. I forget which they are because I didn't have issues, but you may need to avoid them short term but can add them back later.

And most importantly, don't beat yourself up when you make mistakes. There will be a ton of them early on. Just pay attention to your symptoms so that you can figure out the culprits and do better next time. Be really careful with the gluten-free sections in grocery stores. It is scary how often gluten products get shelved in those sections. You're going to become a pro at reading labels!!!

So excited for you and the potential to feel better!

 

[Millie23]

On 11/19/2021 at 12:25 AM, SammieBoo said:

Very interesting. I’m actually going sooner than expected for my biopsy. In a week exactly now. My tTG igA tested at 50, and there’s another test that I can’t recall that tests for destruction of cells in the body I think… and I was told it’s off the charts too. 
 

that’s what I know at this point! 

"In Europe if your antibody tests are 10x the level for celiac disease they are making the diagnosis without a biopsy."

I'm in the UK & my TTG came back at 43 (Range 0.5 - 3.5).  I was pleased to be advised to go gluten-free immediately.  I had biopsy 4 months after diagnosis as I am over 50yrs, which was also positive.  Seven months after diagnosis my TTG was checked again, and was down to 1. 

As you only have a few days left, I suggest that you eat the things that you are going to miss the most.  I think fresh baker's bread is the thing I miss the most.  A decent sandwich is a thing I can only dream of.