Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Could Celiac Disease And Eosiniphilic Esophagitis Be Connected?
0

8 posts in this topic

Hello,

I am new to the forum. I've recently been diagnosed with eosinophilic esophagitis as a result of what I thought was a very bad collagenous colitis flare... I was diagnosed with CC 3 years ago but have had continual issues with bloat, diarrhea depression, joint pain (primarily in my hips) and issues with wheat in particular but also rye and barley and to some extent oats.Especially around the time of my cycle...

Based upon my symptom description my GI ordered B12 and Vitamin D blood tests, a Celiac panel, an endoscopy and colonoscopy. My vitamin D level was 16, B12 normal and Celiac panel negative. Here's part of my issue... I have been trying to eat gluten-free for 3 months, and this is something I shared with my GI. Shouldn't I have introduced gluten back info my diet before testing? Everything I've read seems to indicate this... Is it worth sickening myself and having the test done again?

The other side of the coin for me is the esophagitis... Triggers for this type include GERD, asthma and food allergies... I do not suffer from the first two but - wheat, soy, milk, eggs, seafood and nuts are common food triggers - and I already know that wheat is not my friend. A few days ago I had regular mac and cheese (not thinking) and almost immediately had cramping and diarrhea. I'm using a Flovent inhaler and taking a Nexium a day and I'm down to 1.5 meals a day because I don't know what other triggers cause the esophagitis. Has anyone had an experience with having more than one autoimmune disorder? Do you know of anyone who was diagnosed with one issue which was really masking a greater issue?

Thanks in advance,

Michelle Suzette

0

Share this post


Link to post
Share on other sites


Ads by Google:

If you were strictly gluten free for 3 months than your tests would definitely come up negative (not false negative, but negative, which means you are doing a great job of avoiding the food and your body is healing!). There are several others on this forum that have multiple autoimmune disorders thanks to their issues being ignored by doctors for years or even decades.

It sounds like you have the answer to your question, you feel better and have less triggers when you are off gluten, whether it is celiac, non celiac gluten intolerance, or just a coincidence, is it really relevant? If eating gluten makes you that sick don't feel like you need an official diagnosis, many on this forum are self diagnosed and doing great guiding their own nutritional lives. If you honestly want a realistic test reading I would say at least two months on gluten.

Unfortunately I do not know of a link between celiac and your current condition.

0

Share this post


Link to post
Share on other sites

Yes there is a proven link between Celiac and Eosinophilic Esophagitus. (if I remember right JAMA October '12 or even as early as '11) It has lead to the reccomondation that all new cases of EE be screened for Celiac.

My daughter was diagnosed with "probable" Celiac at 17 months old and EE when she was 6 years old. (Her EE diagnosing scope was done when she was gluten free for almost 5 years.)

It is consistant to be negative on allergy tests, as the reaction isn't really a true "allergy".

The way the elimination diet went in her case was to keep her gluten free and eliminate the top 8 usual suspects and peas. She had a dramatic improvement. She was scoped again (in January) to show complete healing in the esophagus. Then we tried to add back some of the foods on a challenge. She needs to avoid gluten, egg, fish, shellfish, and peas. We have also noted a seasonal allergy connection. late summer early fall triggers the reactions and after the frost freeze of winter the symptoms calm down.

0

Share this post


Link to post
Share on other sites

Thanks to everyone for the advice! I'm still feeling out everything. I try to be informed but short of self-diagnosis but then, you know your body and it's triggers, right? I have a follow up with my GI next week and now that I know more about EE than I did when she called me with the diagnosis, I have a ton of questions for moving forward... I'd much rather eliminate bad foods and find healthier options than continually use a corticosteroid... My GI is a "treat it with drugs first" kind of gal...

Any advice for making it through the holidays? Do you have recipes for your favorite foods? I don't now how much more rice and mashed potatoes I can stomach... lol

Thanks Again,

Michelle Suzette

0

Share this post


Link to post
Share on other sites

Yes there is a proven link between Celiac and Eosinophilic Esophagitus. (if I remember right JAMA October '12 or even as early as '11) It has lead to the reccomondation that all new cases of EE be screened for Celiac.

My daughter was diagnosed with "probable" Celiac at 17 months old and EE when she was 6 years old. (Her EE diagnosing scope was done when she was gluten free for almost 5 years.)

It is consistant to be negative on allergy tests, as the reaction isn't really a true "allergy".

The way the elimination diet went in her case was to keep her gluten free and eliminate the top 8 usual suspects and peas. She had a dramatic improvement. She was scoped again (in January) to show complete healing in the esophagus. Then we tried to add back some of the foods on a challenge. She needs to avoid gluten, egg, fish, shellfish, and peas. We have also noted a seasonal allergy connection. late summer early fall triggers the reactions and after the frost freeze of winter the symptoms calm down.

Wow! Thanks Mommida! My GI basically diagnosed me and prescribed meds so I'm doing the research on EE on my own.. I am glad I found this forum. I don't feel like this is "all in my head" anymore...

0

Share this post


Link to post
Share on other sites




Just saw this thread - I was recently diagnosed with EE but clearly have leaky gut issues (and on the endoscopy my intestines were inflamed. No evidence of celiac so my doctor just stuck me on meds for the EE and never even touched on the issues that brought me in to see her! So I've been doing my own research on the subject but still feel very confused, so I know the feeling!!

0

Share this post


Link to post
Share on other sites

Hi Daisychamp, This is my first gluten free holidays so I'm by no means the expert but it really isn't something to fear. I have a great sugar cookie recipe that I found. I couldn't believe it tastes as good as my old wheat recipe, butter and crispy and good. Great for rolling cookies, http://www.landolakes.com/recipe/1527/star-cut-out-cookies-gluten-free-recipe. A lot of chocolates are fine. Nuts can be a nice treat. Personally I'm a little different because I have had an aversion to wheat as long as I can remember. That's probably why I went 30 years without a diagnosis. So I'd rather have a nice Mexican dinner (without flour tortillas, which I always thought were gross) or some risotto. I bought a great cookbook, "Gloriously Gluten Free". I'd recommend that. Not about substituting wheat but just great recipes that happen to not touch wheat.

=)Megan

0

Share this post


Link to post
Share on other sites

What medications are you taking?

There wasn't any current research (first diagnosed 4 years ago) to justify any long term medication.

At first diagnoses it is pretty standard to go on Flovent (modifed steroid inhaler for medication to be swallowed not inhaled) and Prevacid (at least something to reduce acid and let the esophagus heal)

There were some testing on various asthma medications... My daughter was never prescribed anything further and long term Prevacid really didn't help much.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,698
    • Total Posts
      921,787
  • Topics

  • Posts

    • When it's that high, it almost always means Celiac.  Sure, you can have Crohns, too.  Just like you can have Celiac and diabetes, the common cold or a hang nail.  I wouldn't jump to Chrohns.  I don't think the tTg really has anything to do with Chrohns?  Where did you see that?  Sometimes, a slightly elevate tTg can be elevated from other issues, but >100 is not a " slightly elevated" reading
    • Hi! I'm new here, and I'm looking for some information because I'm having a hard time finding it.  Over Labor Day weekend I got some kind of intestinal bug. I didn't think much of it until the D persisted once a day up til now. I tried a priobiotic but that didn't help much. I have bad anxiety and began to think that I was just anxious and stressed. No fever, no pain, all bloodwork is normal, so no infection or anemia. My mother has 5 siblings and 3 have celiac. One other one had a high result on a blood test but was never officially diagnosed and insists she doesn't have it. So I went to my local health fair and got the ttg-iga test, just in case. My result came back at >100. So I have called and scheduled a visit with a GI for next week. Aside from the recent intestinal issues I have never thought that I had any signs of celiac. I do have dermatographism and have had that since I was 20 (I am 28). I have severe anxiety. I had PUPPPS when I was pregnant with my daughter and it was miserable. It looks much like the skin rashes that celiacs have. Again, didn't think much of it. Because of my anxiety I am terrified that this high blood test is from something else, like crohn's. I don't have diabetes, my liver and thyroid numbers are fine. I think it's much more plausible that this is celiac because of my family history. But my anxiety says "what if it's crohns?" Does anyone have any insight? Is it true that the ttg iga can be elevated from crohns and not celiac? Is >100 pretty definitive of celiac? I didn't know if crohns was the cause if the number would be this high.  I'm just freaked out. 
    • This does say it is for NCGS....so not  for Celiacs.  There is a drug being developed that may actually break down the gluten in the stomach before it hits the intestines.  However, that is still in clinical trials.
    • could be from your neck, or it is, literally, in your head. perhaps a scan is needed.
    • The anxiety thing is there I take teas, and supplements along with CBD oil to help with it, and long walks and exercise when I get antsy. As for the human interaction it is a mix of other mental issues, and the way I feel about people who can eat gluten. If they are not eating I have no issue talking with people. I mentioned I have issues accepting them as the same species when I see them eating. My reaction to gluten is so ingrained in me that it is not a food but a poison, that watching others eat it causes a subconscious reaction where I find myself avoiding them and looking down on them like something from another planet. I end up disgusted with them and walking away, I will go out of my way to avoid people and places where foods like this are present. This is my TRAUMA part of the gluten exposure, and one of the big things I am trying to address in my life right now. I know it is irrational to do so but I end up doing it, I have never cared about others race, religion, or looks, but if I see them eating a gluten/poison, it somehow changes how I perceive them and interact with them and I hate this part about me. It is taking a lot of mental effort to try to smile and treat them as a human, and not something to be looked down upon in disgust. I just recall that mental state that gluten puts me in with my mind and body turning against me and not doing what I will it and the fear comes back. This diet is pretty much like mine, I take Doctors best Magnesium powder in a tea that is actually brewed with st johns wort (never thought much of it) , I use Liquid Health Stress & Energy along with the Neurologic Support they have, twice-three times a day for B vitamins(along with a bunch of other supplements) . I can not digest meats or carbs well, meats it is a issue with breaking them down same with egg yolks, I literally just burp up the undigested meats hours later. I have found the only way to eat them is to boil/slow cook them til they melt then blend them into a broth and have it with digestive enzymes so only do it with turkey bacon, longhorn, and salmon in small amounts in soups or for flavoring stock for stir frys.  As for Carbs like rice and potatoes I end up getting really gassy and bloated, same with sugars in any amount greater then like the size of my thumb give or take. Oats I only have gluten-free Harvest in about a tbsp amount when tasting recipes of stuff I sell at farmers markets. So I eat mostly fats and protein from egg whites, nuts, seeds, veggies, and vegan protein powders blends balanced for complete proteins. I have at least 1-2 dried fig, dates, handful of banana chips, or a 1/4 of a small fruit with meals for fruits.  My meals are mostly egg white and veggie omelettes, stir frys, and soups, Always with lots of fats and proteins in each meal. I have found having nutritional yeast to help with my mood and energy levels also and find someway of having it in meals often. I keep my foods on rotation and keep getting updated feed back on ratios with my dietician. I also have a rather odd list of foods I can not eat due to allergies/intolerance.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,704
    • Most Online
      3,093

    Newest Member
    Fbmb
    Joined