Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Awaiting Endoscopy Results


stiner

Recommended Posts

stiner Newbie

Hello everyone!

I am completely new to this website, but found this forum when doing a lot of research about the disease. It seems like everyone is sharing similar stories - so I just wanted to share mine as each story is a little different.

A little background - I am a 25 year old female. I have always considered myself to have a sensitive stomach and to be lactose intolerant. Milk always bothers me, but I can usually get away with cheese and some other milk products.

About 5 or 6 years ago, i started to get hives regularly. They can be extremely bad for months at a time or close to non-existent for months at a time. For the past couple of years I have discovered claritin/zyrtec so they are not so bothersome anymore.

I also have been one to have extremely random skin rashes. For instance, my last rash was on my bicep and around my armpit and lasted for several months off and on. I thought at first it could be DH (after doing research) but my rashes usually aren't that itchy, but they are painful when I do itch them. I am thinking I may have developed a certain tolerance for "itchiness" since I have been dealing with hives for so long, if that makes sense.

Now - recent developments in the past several months - I have had a ton of diarrhea (~70% of the time), and have had a lot of cold sores in the mouth as well as chelitis. I also developed iron-deficiency anemia - which did not get better after taking Feosol for about 6 weeks. My doctor said my iron levels stayed exactly the same - and told me to double my iron intake. I now take 2 Feosol tablets daily.

My doctor also did a Celiac profile blood test, testing the IgA levels and antibodies. The test came out inconclusive as my IgA levels were low. She sent me to the GI doctor who recommended me for an upper endoscopy. I went yesterday and he said everything "looked fine" but that he would be contacting me next week in regards to the biopsies he took. I am getting a little anxious/nervous in regards to the results. It would almost be a relief if all of these symptoms were all related.

I think I just wanted to share my story with everyone and if anyone has any comments/enlightenments - please post and share your similar experiences!


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



Celiac.com Sponsor (A8-M):



IMWalt Contributor
She sent me to the GI doctor who recommended me for an upper endoscopy. I went yesterday and he said everything "looked fine" but that he would be contacting me next week in regards to the biopsies he took. I am getting a little anxious/nervous in regards to the results. It would almost be a relief if all of these symptoms were all related.

I think I just wanted to share my story with everyone and if anyone has any comments/enlightenments - please post and share your similar experiences!

Me too! I just got back from my endoscopy. Doc said everything looked fine except for something in the antrum campatible with mild gastritis. I will get the biopsy results in two weeks. My blood work was all negative. My daughter has confirmed celiac disease. All the tests don't matter to me, because as of now I am going back to a gluten-free diet. I tried it a couple months ago for 5 weeks, and ALL of my symptoms went away (cramps, bloating, gas, fatigue). I don't know about my anemia yet. I will wait until my next physical for that. I do know that a year of ferrous sulfate supplementation barely improved my low RBC and other iron-related counts.

All I know is that while I was eating gluten again to get ready for the tests, my sore belly, cramps, etc all came back. Loose stools, going 3+ times a day, etc. When I ate gluten-free, I was a completely different person. So tonight I am making the gluten-free bread recipe I found here, and I am looking forward to feeling good again.

Walt

ravenwoodglass Mentor

Welcome to the board. You can now start the diet to see if it helps as you are done with the endo. You may have your answer by the time you go for the results. If you do end up with a negative result on the biopsy do be sure to give the diet a good strict try for a couple of months anyway, biopsies sometimes miss the damaged areas so a dietary trial is still needed no matter what the result.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,083
    • Most Online (within 30 mins)
      7,748

    Jebsca2
    Newest Member
    Jebsca2
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
    • Mari
      Hi Vicky'  If you are hesitant to visit your medical provider and if this discomfort persists you may choose to do that. I do have some suggestions and how ai have delt with digestive problems not caused by gluten but likely a result of having the autoimmune reaction in my small intestine for all the years before going gluten free. Before I stopped eating gluten I had a leaky gut. The gluten inflammatory reaction let other food molecules get just far enough into the wall of the small intestine to be recognized as invaders so I began reacting to them at a very low level, not very noticeable.  When you eat a meal it goes into the stomach and is liquified in a highly acid environment. This may take up to 2 hours. This acidic fluid is then  released into the beginning of the small intestine where, as it is released, bile is squirted into it . The bile is very alkaline so it neutralized the acid.  Without that bile being available the liquid that is released from the stomach may remail too acid and cause discomfort. Many people use antacids to stop the burning but I don't do that because it did not get at the real cause. \\I wrote that I had developed other food intolerances or allergies that weren't noticeable when I was eating gluten foods. Except for hot peppers and all of the nightshade family.  I have mild reaction to other foods. Those reactions cause enough inflammation in my digestive system that impeded food from passing down the small intestine so that when the food was released from the stomach it had no place to go because the small intestine was still having difficulty pushing it along. When the stomach can't release the acid liquidified food down it tends to be forced up resulting in acid reflux.  I learned to do gentle massages of my abdomen and over the last 18 years eliminated many foods from my diet. What I did not realize, although many celias have reported this, is that once a person reacts to a food even tiny amounts of the food I have eliminated, will cause inflammation in my stomach and upper intestine I was getting these very small amount of reaction causing foods in supplements, by cross contamination  . Now if soy or corn, to name just 2, is on a label I don't buy it. Another suggestion is to drink enough water to keep yourself hylrated. That information is available online and depends on you height and weight. I am not a medical practitioner so what I wrote is only from my own experience and what I think about the causes of some of my digestive problems. 
    • Wheatwacked
      Hi @Stephanie Wakeman, Get your vitamind D blood level checked and supplement to raise to around 80 ng/dl or 200 nmol/L.  This is the natural upper limit and provides the best immune system. Vitamin D plays a role in regulating the immune system, and low levels may impair the immune system's ability to control allergic responses.  Vitamin D deficiency may be linked to an increased risk of developing allergies and experiencing more severe allergic reactions.  Vitamin D is one of many vitamin deficiencies caused by small intestine damage so unless you get enough sunlight or taking large doses of vitamin D, you will be deficient.      
    • RMJ
      I’m frustrated with celiac disease and my current gastroenterologist (GI). I’ve been gluten free for almost 13 years, with normal antibodies for almost 8 years - except for one excursion of my DGP IgA 5 years ago which returned to normal when I changed brands of gluten free flour. All 4 celiac antibodies were positive 13 years ago but I didn’t have an endoscopy for reasons unrelated to celiac disease.  I did have one 9 years ago. The DGP IgA was still slightly elevated, GI saw some blunted villi visually, biopsy showed “patchy mild increase in intraepithelial lymphocytes” and “focal mild villous blunting” (Marsh 3A). For the past few years I’ve had intermittent trouble with nausea and stomach pain so my current GI suggested doing a repeat endoscopy. He saw nothing visually, but biopsy showed “focal mild intraepithelial lymphocytosis” and “minimal focal villous blunting”.  All I got was a letter from the GI and his nurse that said there were mild changes consistent with celiac disease. I sent a message to the doctor asking where I go from here but just got an answer from a nurse saying it is better, less damage than 2016 so keep following the gluten free diet. So focal is better than patchy for increased lymphocytes and minimal focal is better than focal mild villi blunting? I feel this biopsy result after 13 years deserves some discussion, but this doctor never answers messages, his nurses just give out canned responses, it takes 6 months to get an appointment, and his only suggestion for nausea and pain was more soluble fiber. I’ve read that adults may not heal completely on a gluten free diet but with normal antibodies for years I was not expecting this result. I have made an appointment with a different GI who hopefully is more communicative. Rant over. Thanks for reading.
    • Pablohoyasaxa
      I was diagnosed with gluten sensitivity and a wheat allergy as a child in the early 1960s, . which I inherited from my father's DNA. My mom tried the best she could with both of us, but in those times health and allergies were kind of brushed aside.  I grew out of it, or so we thought, but the rashes reared their ugly heads while I was in college. Keg parties (wheat & gluten in beer and youthful reckess eating led to an outbreak. To the point, I am a 65 year old and now living with full blown celiac with dermatitis herpetiformis blisters that are just beginning to receed after being gluten-free for over 2 years at least. The lesions are so unsightly that I need to stay covered. Ive been living in South Florida and would love to wear shorts but people see the sores and thing I am a leper. Ive lost a lot of weigh from  stomach cramps and frequent bowel movements. Will this ever end!
×
×
  • Create New...