No Gluten Intolerance Detected

[SiouxsieRice]

I have had Celiac disease for 15 years. I was diagnosed in 2006. I was diagnosed through blood tests and an endoscopy. For the past 15 years, I have tried to eat at home as much as humanly possible, however work, travel and life sometimes get in the way. My disease came out of nowhere...I had a bad bacterial infection from eating meat in Peru, and I never got better. I guess that was what triggered the disease. After a few months, I had lost over 30 pounds. My normal body weight pre-diagnosis was 141. At the time of diagnosis I was 106 pounds. I'm 5'9. (I was a skeleton of myself.) I was so anemic that I couldn't get out of bed. I thought I was dying. Anyhow, I survived, and after the diagnosis it only took a couple of months before I felt better, and I was able to put on 10 pounds of weight and I have kept that weight on for the last 15 years. Weighing anywhere from 115 to 120. Still very thin, but an acceptable thin. So, now for the big news!! I recently had another endoscopy, due to a thyroid issue that I'm having...and the results showed I have "no gluten intolerance". WTF!!! I have been hospitalized so many times over the years, due to gluten digestion. Typically my hospitalizations come after I've lost all of my body fluids and my entire body goes into dehydration mode. In addition to not being able to rehydrate, my body also starts cramping all over and it's extremely painful. The last time I was hospitalized they said that my blood pressure was so high, (due to the dehydration) that I was only minutes away from cardiac arrest. So, the reason I think I've received this diagnosis is because I've worked from home for over a year now (due to Covid), and I haven't eaten anything that I haven't cooked myself. I now understand why they say that you are constantly being "glutened" out there in the real world, even though you're being super careful. Oh, and another thing I forgot to mention is that over the last couple of months my hair has grown super long, my fingernails have grown super long and I've gained 10 pounds. So, I know that my body is healthier than it's been in 15 years. My dilemma is that I don't understand what this means, it certainly can't mean that I don't have Celiac disease...or does it?? Does it change anything??? I would love some good advice on how to move forward, and also how to approach going back to the office???

[GFinDC]

Hi,

Your body should not show damage from an immune attack if you haven't been eating gluten, except in rare cases.   That is the whole point of the gluten-free diet, to give our bodies a chance to heal by not eating gluten.  Not having damage show on the endoscopy after being gluten-free does not change your celiac disease status.  That is the normal result of eating gluten-free for a person with celiac.

[trents]

2 hours ago, SiouxsieRice said:

I have had Celiac disease for 15 years. I was diagnosed in 2006. I was diagnosed through blood tests and an endoscopy. For the past 15 years, I have tried to eat at home as much as humanly possible, however work, travel and life sometimes get in the way. My disease came out of nowhere...I had a bad bacterial infection from eating meat in Peru, and I never got better. I guess that was what triggered the disease. After a few months, I had lost over 30 pounds. My normal body weight pre-diagnosis was 141. At the time of diagnosis I was 106 pounds. I'm 5'9. (I was a skeleton of myself.) I was so anemic that I couldn't get out of bed. I thought I was dying. Anyhow, I survived, and after the diagnosis it only took a couple of months before I felt better, and I was able to put on 10 pounds of weight and I have kept that weight on for the last 15 years. Weighing anywhere from 115 to 120. Still very thin, but an acceptable thin. So, now for the big news!! I recently had another endoscopy, due to a thyroid issue that I'm having...and the results showed I have "no gluten intolerance". WTF!!! I have been hospitalized so many times over the years, due to gluten digestion. Typically my hospitalizations come after I've lost all of my body fluids and my entire body goes into dehydration mode. In addition to not being able to rehydrate, my body also starts cramping all over and it's extremely painful. The last time I was hospitalized they said that my blood pressure was so high, (due to the dehydration) that I was only minutes away from cardiac arrest. So, the reason I think I've received this diagnosis is because I've worked from home for over a year now (due to Covid), and I haven't eaten anything that I haven't cooked myself. I now understand why they say that you are constantly being "glutened" out there in the real world, even though you're being super careful. Oh, and another thing I forgot to mention is that over the last couple of months my hair has grown super long, my fingernails have grown super long and I've gained 10 pounds. So, I know that my body is healthier than it's been in 15 years. My dilemma is that I don't understand what this means, it certainly can't mean that I don't have Celiac disease...or does it?? Does it change anything??? I would love some good advice on how to move forward, and also how to approach going back to the office???

I don't think this is such a mystery. Your efforts over the years at avoiding gluten, even though there were occasional episodes of exposure, has allowed a measure of healing for the villi lining our small bowel. The last two months of only eating your own cooking (where you had complete control of ingredients) has allowed for the healing to be complete. The weight gain and healthier hair and nails is confirmation of what the most recent endoscopy found.

[CMCM]

Long ago, my mother almost died before she was diagnosed with celiac disease (1967!!).  She was extremely sensitive to even the smallest amount of cross contamination, and would get violently sick in such cases.  For this reason, she rarely ate out as it was a real minefield for someone as sensitive as she was, and in the beginning years after her diagnosis she was terrified of eating out anywhere, and she didn't.  

The recent gluten free "awareness" and proliferation of products and claims of "gluten free" foods in restaurants and the unfortunate  fad aspect of being gluten free among so many people who aren't actually celiac or gluten sensitive has led to it being claimed gluten free very commonly, yet the restaurants and chefs often know very little about how careful they must be in preparing foods that are truly gluten free and safe for us.  Also, products that claim to be gluten free sometimes turn out to have gluten in them anyway.  So it's a real minefield.  

I've pretty much stopped eating out except for one totally gluten free bakery-deli I know of.  Restaurants with mixed foods are always risky no matter what they say.  Sad but true.

[Scott Adams]

Wow, 1967 is way back for a diagnosis. It's amazing that she found a doctor who figured this out. Do you know how she was diagnosed? I assume a biopsy, as I don't even know if they had any blood tests back then.

[CMCM]

4 hours ago, Scott Adams said:

Wow, 1967 is way back for a diagnosis. It's amazing that she found a doctor who figured this out. Do you know how she was diagnosed? I assume a biopsy, as I don't even know if they had any blood tests back then.

I don't remember a lot of details and I was only 17 at the time, but I'm sure there wasn't any sort of diagnostic celiac blood panel back then.  And no gene test either.  I do know she had an endoscopy to diagnose it.  After a parade of doctors over several years who were utterly clueless about what was going on with her, it was her great fortune to encounter one who apparently knew a bit about celiac disease.  He ordered the endoscopy and apparently diagnosed her due to what they found (no villi left).  They also told her that her stomach lining was quite damaged, probably due to irritation from her constant vomiting.  I also remember her telling me that she had a second endoscopy about a year later to see if the villi had regenerated on the gluten-free diet, and they had.  It was only when I was researching for myself in 2005 and did the gene test that I convinced her to also do a gene test at Enterolab....that's when we discovered that she had two DQ2 celiac genes!  And knowing she would be giving each of her four children one of her DQ2 genes too, my two brothers never wanted to bother getting tested.  (My sister did, out of curiosity for what her 2nd gene might be).

[Scott Adams]

My kids both have the gene as well, one is gluten-free and one isn't, but it's time he got re-tested (his last blood tests were negative, but that was years ago). I have DQ2 and DQ8, one from each parent!

In any case, I'm always amazed to hear that even back in 1967 there were some amazing doctors who knew about this. Thanks for sharing!

[SiouxsieRice]

15 hours ago, CMCM said:

I don't remember a lot of details and I was only 17 at the time, but I'm sure there wasn't any sort of diagnostic celiac blood panel back then.  And no gene test either.  I do know she had an endoscopy to diagnose it.  After a parade of doctors over several years who were utterly clueless about what was going on with her, it was her great fortune to encounter one who apparently knew a bit about celiac disease.  He ordered the endoscopy and apparently diagnosed her due to what they found (no villi left).  They also told her that her stomach lining was quite damaged, probably due to irritation from her constant vomiting.  I also remember her telling me that she had a second endoscopy about a year later to see if the villi had regenerated on the gluten-free diet, and they had.  It was only when I was researching for myself in 2005 and did the gene test that I convinced her to also do a gene test at Enterolab....that's when we discovered that she had two DQ2 celiac genes!  And knowing she would be giving each of her four children one of her DQ2 genes too, my two brothers never wanted to bother getting tested.  (My sister did, out of curiosity for what her 2nd gene might be).

Sorry, I meant 2006!! LOL

 

[Scott Adams]

Quote

I had a bad bacterial infection from eating meat in Peru, and I never got better. 

BTW, your trigger sounds remarkably like mine. I had various issues like a very itchy rash that was probably DH since childhood, but it wasn't until I was in college and on a backpacking trip to Europe that I got full blown celiac disease, which was triggered by what I thought at the time was a classic case of food poisoning. I got violently ill after eating some lunch meats from a supermarket. I suppose it could have been rotavirus, which is linked to celiac disease, but am pretty sure it may have been E. coli, because of how sick I got. I never fully recovered from this episode until I went gluten-free, which was about 5 years after that when my doctors finally figured it out (sort of, I figured it out and asked to be tested for it).

[SiouxsieRice]

24 minutes ago, SiouxsieRice said:

Sorry, I meant 2006!! LOL

 

I apologize, I didn't realize the comment was for another person. You know it's funny! My neurologist did his thesis for medical school on Celiac Disease in 1967. I couldn't believe it when he told me. 

[CMCM]

44 minutes ago, Scott Adams said:

My kids both have the gene as well, one is gluten-free and one isn't, but it's time he got re-tested (his last blood tests were negative, but that was years ago). I have DQ2 and DQ8, one from each parent!

In any case, I'm always amazed to hear that even back in 1967 there were some amazing doctors who knew about this. Thanks for sharing!

Do you think either of your parents had issues caused by gluten, if not celiac disease?

[MADMOM]

On 4/27/2021 at 9:02 PM, trents said:

I don't think this is such a mystery. Your efforts over the years at avoiding gluten, even though there were occasional episodes of exposure, has allowed a measure of healing for the villi lining our small bowel. The last two months of only eating your own cooking (where you had complete control of ingredients) has allowed for the healing to be complete. The weight gain and healthier hair and nails is confirmation of what the most recent endoscopy found.

i have been  gluten free since mid jan -diagnosed then as well - initially i lost 6-7 pounds from the anxiety and fear i had over my dx;  i didn’t have any GI issues other than pinchy pains under my ribs that started around nov 20.  i was dx through biopsy and blood work; i noticed this last month that i put on a good 7-8 pounds and my nails grew nice and strong (i could never grow my nails ever)  i feel much better but don’t want to gain so much weight either - i noticed a lot of gluten free food has a lot of carbs - i started doing weight watchers gluten free style to keep in shape but wondering if the weight gain is also a sign of starting to heal ??? 

[trents]

4 minutes ago, MADMOM said:

i have been  gluten free since mid jan -diagnosed then as well - initially i lost 6-7 pounds from the anxiety and fear i had over my dx;  i didn’t have any GI issues other than pinchy pains under my ribs that started around nov 20.  i was dx through biopsy and blood work; i noticed this last month that i put on a good 7-8 pounds and my nails grew nice and strong (i could never grow my nails ever)  i feel much better but don’t want to gain so much weight either - i noticed a lot of gluten free food has a lot of carbs - i started doing weight watchers gluten free style to keep in shape but wondering if the weight gain is also a sign of starting to heal ??? 

Yes. Your body is now absorbing more of the nutrition you take in.

[MADMOM]

how long befire you did a repeat endoscopy to check for healing?  my doc thinks i should go around 8-12 month mark - also how often did u check ur celiac levels and how fast did they come down? 

[trents]

Maybe about a year I think and there was not much healing at that point. Over the span of about 15 years post diagnosis I had three follow-up endoscopies. If my memory serves me correctly, the second follow-up endoscopy came at about three years post diagnosis and the third about three years ago or about 15 years post diagnosis. The last one showed I had finally healed. I think it took so long because I was likely getting gluten more often than I realized. It wasn't until I reached retirement age that I was able to have tight control over what I ate. I was also on a PPI (proton pump inhibitor) for GERD for all that time and recent research suggests those kind of meds can contribute to villi blunting. I have since weaned myself off the PPI. It typically takes two years or so of strict gluten free eating to realize full healing of the small bowel lining. All the follow-up was via endoscopy as opposed to blood antibodies.

Edited May 1, 2021 by trents

[MADMOM]

any other conditions over the years?  i’m so scared of getting something bad however i had ultrasounds and blood work prior to dx and liver gallbladder anf kidneys were all normal as well as blood test - other than slight anemia - i don’t understand why they scare us with these early death blogs etc when we are treating this condition... shouldn’t we have same life span as any other? 

[trents]

Look, I'm 70 years old so by now I would expect this and that medical issue to develop whether or not I have celiac disease. I have some osteoarthritis here and there but in good general health and still mobile and active. I have osteopenia, likely from the celiac disease, but have not suffered any fractures to this point. I count my blessings that I have so few medical limitations. Better off than many people my age. My life is in His hands anyway so I just deal with things as they come if they come. I don't know what the future holds but I know who holds the future.

[MADMOM]

so glad you are so healthy and have very few medical issues.  keeps me hopeful that we can all have a long life as long as we stay on this gluten free path - how old were you at time of diagnosis? 

[trents]

3 minutes ago, MADMOM said:

so glad you are so healthy and have very few medical issues.  keeps me hopeful that we can all have a long life as long as we stay on this gluten free path - how old were you at time of diagnosis? 

Maybe 51 or 52.

[MADMOM]

wow!  i’m feeling more hopeful now that i will be ok - i am 48 just got diagnosed this past jan 

[trents]

7 minutes ago, MADMOM said:

wow!  i’m feeling more hopeful now that i will be ok - i am 48 just got diagnosed this past jan 

You're good to go! Just a spring chicken.

We cannot change what damage may have already been done to our bodies by living with undiagnosed celiac disease. And some kinds of damage may continue to play themselves out over time, even after we adopt a gluten free lifestyle. Some kinds damage is usually quite reversible by gluten free eating, e.g., liver inflammation and gut inflammation. Other kinds of damage is not so reversible, like bone and tooth demineralization (at least past a certain age). The celiac immune system dysfunction may also not be reversible and may continue to manifest itself in various ways over the years after we adopt a gluten free lifestyle. But one thing is for sure, adopting a gluten free lifestyle will limit further damage and that is what we need to focus on.

[MADMOM]

ty for your advice and for sharing your experience - my hope is to continue this new lifestyle and to try and get healthier - reading all the tile about other issues that can occur occasionally give me anxiety - i started this journey pretty much very healthy - i hope to heal my gut and enjoy my life without fear