Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Eosinophilic Gastroenteritis

pixiegirl
 Share

Recommended Posts

pixiegirl Enthusiast
pixiegirl
Posted

I posted about the results of my endo. and colonos. and I didn't get any comments at all. :( But I have since found out what I have is Eosinophilic gastroenteritis. This is on top of Celiac. It means I will have to elminate more food from my life, take steroids, and general I'll be a lot sicker then I thought.

Is anyone else dealing with this or no anything about it first hand (yes, I've googled it and read up on it but I'd like some first hand experience)?

Thanks, Susan

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


RiceGuy Collaborator
RiceGuy
Posted
(edited)

Well, according to what I've just read about the disease, the actual cause is unknown. IMHO celiac disease could be the underlying cause. You would not be the first to find major improvement in other problems once you get celiac disease under control. I hope that is the case for you, as the outlook you describe is rather grim :(

I don't know how you feel about doctors and their drugs, but I for one will not take drugs, especially after all I've been through with doctors in the past. I don't go to doctors anymore, since all they did was make things worse.

I don't want to try and give medical advice, but based on what you describe, I'd go gluten-free and probably stay away from casein, lactose, soy, and anything else which might interfere with recovery. Then monitor my conditions and see how things improve. I'd be betting the other conditions begin clearing up as well.

Edited by RiceGuy
Matilda Enthusiast
Matilda
Posted

..

pixiegirl Enthusiast
pixiegirl
Posted
  • Author

Just for the record I've been gluten free for 1 year and 3 months. I felt great for the first few months and then symptoms started to return, not to mention new ones. I don't like drugs either but I've felt so terrible lately that I'm at a point where I'll try them. I've also got 6 small ulcers in my stomach.

I'd like to think this new wrinkle is caused by celiac disease but I got on a list for Eosinophilic gastroenteritis and not only is it rare (so there are no lists like this one, where you get replies quickly) but most of the people have no problems with gluten and most of them have been tested for celiac disease in their long roads to trying to find out what is wrong with them. Most don't have celiac disease, so I don't think its caused by it.

I'm always such an "up" person but the past few days have really been hard for me.

Best, susan

paw Apprentice
paw
Posted

Susan, this is the first time I ever heard the term "Eosinophilic gastroenteritis". I have no help to offer you, but I hope that now that the doctor knows what is making you feel so bad they can start to take care of the problem and get you better.

jerseyangel Proficient
jerseyangel
Posted

Pixiegirl--I had never heard of your condition, but I googled it just now and there is a ton of info. there. I only read for a little while, but from what I read, wheat/gluten is a problem for a lot of those with EG. There was a lot of info on food sensitivites associated with it. If it were me, I'd settle in and do some reading on the subject--I read everything I can get my hands on when it comes to Celiac--knowledge is power! :)

RiceGuy Collaborator
RiceGuy
Posted

Plenty of good comments thus far. I'd only add that most people on this board seem to be saying that their tests for celiac disease were largely/entirely negative. It is not diagnosed very well at all, though more often now than it was.

I've also noticed new symptoms since going gluten-free. Many others do to. That seems to be very common. Apparently these subside as the gut heals.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


pixiegirl Enthusiast
pixiegirl
Posted
  • Author

Oh don't worry I'm staying gluten free, I get so sick every time I accidently get glutened. I'm just down, I guess, about having something else wrong with me. Eosinophilic gastroenteritis is rare so there are not big groups and such like there are for celiac disease. I joined the Yahoo groups for it and every single post is just a "pray for me" post, they don't give out any actual info, so thats upsetting. I'm an info junkie. I did the Yahoo/google searches too and they don't know much about this diseas so maybe thats the problem.

peace, Susan

  • 12 years later...
bstivers71 Newbie
bstivers71
Posted

both my daughter's have Celiac disease . My older daughter is a first generation and was diagnosed at age of 2 before anyone knew what it was that was 16 years ago. My youngest daughter was diagnosed in 2016 at age 14 . With that being said . My youngest has been having bad pains since dec. and will be going in  this Thur for another scope. The ped doc things is Eosinophilic Gastroenteritis.  When talking with the ped Gi  doc He has asked my history and I do have history of issue with my esophagus but I explained my daughter doesn't it's just serve abdominal pains and feeling sick to stomach and pain. Has anyone had done and know do they check both spots because i know there is something called EOE . but like I said she doesn't have issue with esophagus.  She has high Eos levels. but her celiac levels are within normal range. which is good so I'm not sure what could be causing . 

  • 1 year later...
suzymom Newbie
suzymom
Posted

My son (16) was tested for food allergies 2 years ago.  Positive for an onion allergy, but we told it was likely a false positive.  Negative for Celiac via blood test.  We didn't really make to many changes.  Fast forward, EGD and colonoscopy … now he has been diagnosed with both Celiac and Eosinophilic Gastroenteritis.  Celiac … not too hard to be gluten free these days, but ONIONS?  oh my!  That's a doozy.  We have eliminated both in the last week.   I am glad we found some answers and am hopeful.  Doctor said that if he didn't have gluten within 24 hours of the blood test, it's not unheard of to test negative.  Good luck, everyone!

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
 Share
Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      - Scott Adams replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Dried Chickpeas

      If a package of dried chickpeas or lentils says “may contain” or “may have been cross contaminated,” that usually means they were processed in facilities that also handle wheat, barley, or rye. The concern is not gluten dissolved on the surface like dust that can simply be rinsed away, but small fragments of gluten-containing grains that may be mixed in duri...
    2. knitty kitty
      - knitty kitty replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Dried Chickpeas

      Welcome, While picking through chickpeas and lentils I have found little pebbles and on occasion, a kernel or two of wheat. Farm equipment and transport trucks are used to harvest different crops. It would be really expensive to have separate trucks and packaging lines for each crop. I have found sorting or picking through the peas or lentils...
    3. trents
      - trents replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Dried Chickpeas

      Welcome to the celiac.com community, @Thoughtidjoin! I would think so, yes. But you need to realize that cross contamination studies with lintels have shown the real problem isn't only coming in contact with gluten containing grains in processing but in the actual mixing in of cereal grain seeds in significant quantities with the lentils. I think it...
    4. Scott Adams
      - Scott Adams commented on Scott Adams's article in Origins of Celiac Disease
      7

      Do Antibiotics in Babies Increase Celiac Disease Risk Later in Life? (+Video)

      I think you're reading way too much into this study--it is a large population-based study, and when they do these they aim not to focus it on a particular smaller sub-set of the population, in fact, they take measures to be sure that doesn't happen.
    5. Thoughtidjoin
      - Thoughtidjoin posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Dried Chickpeas

      Can I wash gluten off dried chickpeas or green lentils when the packet says “may have been cross contaminated?” Has there been any research into this? If so what are the results? If no research has been done why not? I am getting mixed advice from different sources, how serious is this or are the food manufacturer being over cautious? Many tha...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,432
    • Most Online (within 30 mins)
      7,748
    ainsleydale1700
    Newest Member
    ainsleydale1700
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      Dried Chickpeas

      By Scott Adams · Posted

      If a package of dried chickpeas or lentils says “may contain” or “may have been cross contaminated,” that usually means they were processed in facilities that also handle wheat, barley, or rye. The concern is not gluten dissolved on the surface like dust that can simply be rinsed away, but small fragments of gluten-containing grains that may be mixed in during harvesting, storage, or packaging. Rinsing and sorting can reduce surface flour and remove visible stray grains, and many people do this successfully, but it does not guarantee that all gluten contamination is eliminated. Some limited testing has shown that naturally gluten-free grains and legumes can contain measurable gluten when cross-contact occurs in shared facilities, which is why manufacturers use precautionary labeling. The seriousness depends on the individual: for someone with celiac disease, even small amounts of gluten can trigger intestinal damage, so choosing certified gluten-free legumes is the safest option. Manufacturers are not necessarily being overly cautious; they are often acknowledging real cross-contact risk in complex agricultural supply chains.
    • knitty kitty
      Dried Chickpeas

      By knitty kitty · Posted

      Welcome,  While picking through chickpeas and lentils I have found little pebbles and on occasion, a kernel or two of wheat.  Farm equipment and transport trucks are used to harvest different crops.  It would be really expensive to have separate trucks and packaging lines for each crop.   I have found sorting or picking through the peas or lentils along with a good rinse sufficient to make them safe for me.  Do remember that lentils and such are high in carbohydrates.  Eating a diet high in carbs can lower thiamine B1.  Good sources of Thiamine and other B vitamins are meats.  Extra thiamine is needed for tissue repair to grow the villi back and recovery from malabsorption.  Low thiamine symptoms (gastric Beriberi) are very similar to symptoms of a glutening.  Try adding thiamine hydrochloride or Benfotiamine and see if you still react to chickpeas and lentils the same way. Supplementing with extra thiamine is safe and nontoxic.   Best wishes.
    • trents
      Dried Chickpeas

      By trents · Posted

      Welcome to the celiac.com community, @Thoughtidjoin! I would think so, yes. But you need to realize that cross contamination studies with lintels have shown the real problem isn't only coming in contact with gluten containing grains in processing but in the actual mixing in of cereal grain seeds in significant quantities with the lentils. I think it was a study done by Gluten Free Watchdog I'm thinking of but they did an actual count of the seeds in a purchased mainline food company bag of lintels and found something like 20% of the content was wheat seeds. So, you'd better do some sorting first.
    • Thoughtidjoin
      Dried Chickpeas

      By Thoughtidjoin · Posted

      Can I wash gluten off dried chickpeas or green lentils when the packet says “may have been cross contaminated?” Has there been any research into this?  If so what are the results? If no research has been done why not? I am getting mixed advice from different sources, how serious is this or are the food manufacturer being over cautious? Many thanks Catherine
    • catnapt
      Collecting all possibly related lab work?

      By catnapt · Posted

      I've got some lab work results going back to 2010, various MRIs and CT scans and ultrasounds. I discovered two things that MIGHT be of interest to the GI doc tell me what you think? one is the results to an abdominal CT scan with contrast in 2013 that includes this:  "there is some thickening seen in the second and third portions of the duodenum"    Since this CT scan was for left lower quad pain, it was not followed up on   Then in May of 2024 I saw a foot specialist for problems with my feet. Some of that pain is due to a very obvious deformity of both of my legs- the right worse than the left. The dr suggested that my symptoms sounded like an auto immune condition (???) and I thought he was nuts but he ordered some lab work- it came back negative except for a weak positive on one test HLA-B27 and there was a follow up test recommended but that was never ordered and this dr gave me a useless Rx for custom insoles which he refused to address - and my calls to his office were never returned.   At that time I was having all over joint pains, plus some numbness in my feet (also stiffness) and some burning pain in my toes- esp the big toe on the right foot (the more deformed side of my body)   The last time I was eating any appreciable amount of gluten containing foods was in the period of Nov 2024 to around sometime in the summer of 2024. I regularly ate a barley soup that I loved and had subs and pizza and toast etc. I was no longer eating wheat pasta, had already switched to brown rice pasta but otherwise I had not yet made a clear connection between what I was calling 'refined grain products' and any symptoms that I had. And the symptoms were vague and could be attributed to other things.   I was referred to a neurologist in late 2023 for symptoms  of confusion/disorientation, that included loss of balance that I attributed, in part, to the inability to feel where my feet were. Some symptoms such as high spikes in blood pressure (some close to 200 over 100! scary stuff) were later determined to be due to covid or long covid (also had loss of sense of smell and taste)    I had periods of dizziness that did NOT include any spinning sensations, it was more of a feeling of lightheadedness as if my mind would go blank- very strange, never really got any answers about that but that eventually went away so not worried about that   WHAT OTHER THINGS from my past records might be good for the GI dr to know? I had my very first Vit D test done in 2023 and it was low at 23, supplements have gotten that up in the range of adequate but values varied up and down... most recent test was Nov 2025 and it was 45ish I think. That's on a min of 5000Ius per day (there are some fortified foods I eat sometimes that have added vit D)   I thought my serum calcium ran on the low side but it turns out that the reference ranges have changed for the labs that I use- one changed their RR back around er, 2014 I think? so I have no clue how to compare the results before and after those changes   calcium has never been below normal and most of my blood work looks "normal" except during illness or other issues like if I'm in afib- blood work looks insane LOL    I don't know what to make of all this but it sure will be nice to get some answers!         
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.