the patient celiac

Celiac Knowledge is Power

16 comments September 16, 2015

When I started this page back in 2012, about two years after my celiac diagnosis, I followed several other celiac webpages/blogs and was an active participant in the online forums. Being able to interact with other people who were medically gluten-free, like me, and reading about their experiences helped me to feel so much less alone. With time, though, I have had to stop participating in celiac forums and leaving comments on others’ pages. Part of this is due to time constraints, but a lot of my lack of participation is due to people complaining and criticizing each other online. If we, as members of the celiac community, dedicated our efforts to educating and supporting each other as opposed to whining and feeling sorry for ourselves, I think we could do an amazing job of spreading celiac knowledge.

There are so many fascinating things about celiac disease that I did not learn until after my own diagnosis, such as the following:

Celiac disease can develop at any time during life. A person can test negative at age 55 but then have full-blown celiac disease at age 60. You can be diagnosed when you are 9 months old or 99 years old.

You can have undiagnosed celiac disease and be overweight or obese. People of any body shape can develop it. Most adults are not extremely thin at the time of diagnosis, contrary to popular belief.

Celiac disease can affect just about any part of the body, including the brain, reproductive system, bones, liver, joints, skin, and teeth. Many people with celiac disease do not have digestive symptoms, instead suffering from symptoms like arthritis, nerve inflammation (neuropathy), headaches, difficulty getting pregnant, and elevated liver enzymes. It can take years, and even decades, to get a firm diagnosis (I personally experienced this).

Once a person has been on the GF diet for > 2 weeks, celiac antibody blood testing is pretty much useless—patients need to be eating gluten on a regular basis in order for celiac antibodies to be detected in blood. The same goes for endoscopy and small bowel biopsy.

When a patient is diagnosed with celiac disease, all first degree family members (siblings, parents, and/or children) should also be screened, as they are at a much higher risk than the general population. Second degree relatives (aunts, uncles, cousins and grandparents) should also consider screening.

Many people with celiac disease continue to have symptoms even after months on the GF diet (called non-responsive celiac disease, NRCD).   The most common cause of continued symptoms is ongoing gluten exposure, which is often accidental cross-contamination. Many of the current celiac drugs in development are to help to prevent us from experiencing NRCD.

Over-the-counter gluten-digesting enzymes are not safe for those of us with celiac--they do not break down gluten into small enough pieces to not cause an autoimmune reaction.

Lastly, coffee does not cross-react with gluten.  If this was the case, based on how much coffee I consume I would be dead, or at least chronically ill with persistently elevated celiac antibodies :)

I could keep going, but I think you can get the idea…it’s possible that through sharing just a few of these facts that you might help someone realize that they need to be tested for celiac. How cool would that be?

Also, totally random stuff for those of you who are still reading:

-As I posted on my Facebook page, I have recently become a member for the New England Celiac Organization (NECO) and plan to attend some of their meetings in the greater Boston area from time to time. Please email me (thepatientceliac@gmail.com) if you are interested in attending one of the NECO meetings together.

-I recently learned that Melinda Dennis, a well-known celiac dietician and co-author of the book "Real Life with Celiac Disease," will be holding celiac/GF wellness retreats this fall and winter in NH and CA. You can check out her website, www.deletethewheat.com, for more information. I am seriously considering registering for the one in Santa Barbara, especially if this winter is as awful as last winter.

-Lastly, I think I’ve only had one person tell me that celiac disease “sucks” over the last few weeks since I moved. I think this is a record since I was diagnosed :)

Thanks for reading!

Comments
Beth
Hello – I love your site and hope you are settling well in Boston, I am in Australia and have relatives in Marblehead :) I am just querying your ” coffee does not cross-react with gluten” statement. I have reacted to coffee with the same reactions I get from gluten (I am coeliac). I have the same problem with quinoa. I have read that organic freshly ground coffee beans are safe. Is coffee one of the cross reactivity things that coeliacs respond to differently?
7/19/2016 6:06:46 PM
Ken
Appreciate this information without all the drama found at other sites. I was diagnosed with celiac disease in September after many tests. I had few symptoms making the find a bit harder. Surgery 2 years ago seems to be what brought it forward. I was losing weight which I enjoyed as I was doing about 2.5 hours a day of physio. A normal annual medical found anemia and I was tired often but still active. A couple other symptoms I never realized were connected to celiac as they were not big deals. I am now gluten free and feeling so much more energy. But while my system wasn’t getting all the great nutrients we need, an infection took over and I will now be heading for at least two more surgeries. I can’t help but think celiac is perhaps in part why I could not fight off the infection. But I still feel so good and ready to take on the next surgeries knowing I have more nutrients getting into me to fight things off. I enjoyed reading at this site. I am 63 years young.
7/19/2016 6:06:00 PM
Missy
Forgot to add, I’m 38 years old now, will be 39 in January. My symptoms started shortly after a year old. I had recurrent ear infections beginning before the age of 2. If I actually get a diagnosis, that’ll be 37 years? Ugh.
7/19/2016 6:05:30 PM
Missy
Hey there, Jess!

I love your blog, because it’s the only one that presents the kind of info that I wish all of my doctors knew!

I have had gut issues for my whole life, but notably, I would “break out in hives” whenever eating oats as a kid. I suspect I probably had an allergy to oats, but not to bread (I wouldn’t get the hives with bread). Still, my folks kept me off of oats, religiously, but never questioned my other consistent, recurring complaints about bloating, pain, gas, diarrhea, etc.

I hit puberty late (my sister had her period at 11, I was almost 15). I developed what I think is DH on my buttocks and thighs as a teen (it was super itchy and gross) and remember a boyfriend commenting on it once (“what’s that rash?”), but chalked it up to a probable detergent allergy. I went vegetarian because I thought that would fix my gut issues, but it seems like it probably worsened them. I had a two seizures in my early twenties and horrible period pain.

When my son was born (I was 27), I started to figure out that gluten could be the issue. He had an allergy to milk and would react if I had milk and nursed him. He had failure to thrive before the age of 1, so I started really researching gut stuff and realized I probably had celiac. I went and got blood tested and it came back negative, so I continued to stuff my face with bread. At some point, though, I realized that eating gluten was making my periods insanely painful, so I decided to go GF again because of that. I went from debilitating cramps to “oh, is my period happening?”. I can’t tell you how liberating THAT was!

But I was still just “gluten sensitive”, so would cheat about once a month. As long as I didn’t cheat too close to my period, I would have a tolerable cycle.

I finally decided to get tested (and am currently doing a gluten challenge) for a few reasons: 1) My son was diagnosed with Crohn’s (thankfully, he’s in remission through the SCD diet!), 2) we did genetic testing via 23andme and I discovered I’m homozygous for HLA-DQ2.5 (he’s DQ2.5 and DQ8 so I’m terrified about type 1 diabetes for him), and 3) I went really strict GF for about 8 months and my vitamin D and triglycerides, which were both pathetically low for a very long time (my vitamin D was 19, my triglycerides were around 39…I’ve read anything less than 50 is probably a result of fat malabsorption), and finally my triglycerides were at 90.

Here’s my question to you: I’ve read in a couple of places that having DH is an automatically positive test for celiac, you don’t have to get the biopsy (but you do need the skin biopsy). But I’ve also read that the blood testing for celiac is often negative in folks with DH (something like a 40% false negative rate). I’m two weeks into my gluten challenge…I have bumps all over my buttocks and scalp for the first time in years, but they’re not insanely itchy (just mildly itchy). I worry that this is actually DH and again, I’ll probably have negative blood work for celiac, and I’m worried that skin testing will come up negative. Can I convince my doc to do a endoscopy/biopsy even without positive blood test?

Thank you for all that you do!

Missy
7/19/2016 6:05:00 PM
Jess
In reply to Deseret Johnson.
Hi Deseret,
Celiac disease can develop at any time and your symptoms (anemia, abdominal pains, etc) may be symptoms of celiac.
You should discuss getting tested with your doctor.
I wish you well.
Jess
7/19/2016 6:04:12 PM
Jess
In reply to Kate M.
Hi Kate,
To the best of my knowledge, asymptomatic but high risk kids are supposed to be screened via celiac antibody testing every 2-3 years starting at age 3-4. This is exactly what we have opted to do for all 4 of our kids.
Jess
7/19/2016 5:53:09 PM
Jess
In reply to Lucente.
Thanks so much for reading Lucente! I have been having a lot of problems with this site, so I am glad to see that you were able to read my post. I hope you’re doing well.
Jess
7/19/2016 5:52:32 PM
Jess
In reply to Ana Pimenta.
Thanks Ana! Moving and settling in has been much more stress than I ever imagined, but it is finally starting to feel like home. Thank you so much for reading and I wish the best for you and your family.
Jess
7/19/2016 5:51:28 PM
Ana Pimenta
Thank you Jess for your words. I couldn´t agree more. All the best at the new home!
7/19/2016 5:51:10 PM
Kate M
Thank you so much for continuing to write and share. It is always so helpful.

I was diagnosed with Celiac in April 2014, my father in July 2014, and my sister last month. We had my son screened at 3, and he tested negative. My daughter is turning two, and I am planning to have her screened. How often should I re-screen my children when they test negative? My pediatrician has been resistant to re-testing, as he feels my children don’t have symptoms (but you could have said that about me for the majority of the 33 years that I went undiagnosed). Would love your thoughts on this issue!
7/19/2016 5:50:36 PM
Deseret Johnson
Hello! I’m 17 and have been doing lots of reading on celiac disease lately. I haven’t been tested or diagnosed yet, but I’ve been sick with stomach pain for weeks now. Two years ago I was diagnosed with severe anemia and as I’ve been doing research I have many of the symptoms listed. I think it’s very probable that I have this! Most of them (including this constant stomach pain) started the begging of September. I’ve run cross country since I was a freshmen, but I feel that many of my symptom are worse when I run hard (lately anyway). Do you know if running hard would affect celiac disease at all? Do you think I could really just all of a sudden get it? I’d love to hear your opinion! Thanks!
7/19/2016 5:46:20 PM
Lucente
My thoughts exactly! Thank you.
7/19/2016 5:45:44 PM
Jess
In reply to CJ.
Hi CJ,
I would love to meet up with you at one of the meetings. Which ones have you been attending?
Next up on my list is the one in Reading.
Looking forward to meeting you (hopefully).
Jess
7/19/2016 5:44:39 PM
Jess
In reply to christine.
Hi Christine,
Thank you so much. It’s so nice to know that you, and many others, are still out there and reading after my long blogging break. Thank you for sharing my post. And please let me know if you have any ideas for topics for future posts.
Jess
7/19/2016 5:43:08 PM
Christine
I always enjoy your posts and am definitely sharing this one…
Thank you!
7/19/2016 5:42:45 PM
CJ
I’ve been going to NECO meetings recently. They’re excellent. Love to have you! There’s one tonight in Needham.

Cheers,

CJ

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7/19/2016 5:37:41 PM
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