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

Big Surprise For Me.


Simona19

Recommended Posts

Simona19 Collaborator

Hi!

Tomorrow early morning I will have my second endoscope after 1 year on gluten free diet. I saw my first Gastroenterologist last week on Wednesday. He ordered some blood work and upper endoscope because I still have some major unresolved issues. I can


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



Celiac.com Sponsor (A8-M):



Simona19 Collaborator

I just got home from my upper endoscope and everything was perfect. No ulcers, tumors, cancer, nothing. Just my throat hurts a lot. Doctor told me that I might have SIBO again and also some neurological issue. I need to fallow with neurologist also. She took many samples from intestines. I just need to wait for the results. She also thinks that might have diverticulitis, or something with small intestine because of my low magnesium and B12 levels. Now I just need to wait and see.

T.H. Community Regular

Good luck to you, hon!

A quick question...he wasn't performing the endo FOR celiac disease, right? He's just checking to see what else was going on and thinks celiac disease might have been part of the issue, yes?

I only ask because you've been on the gluten-free diet for a year now, so there'd be nothing to find on the endo for that unless you've been on gluten again for a few months, ya know?

Re: other issues. You said that you had a lot of tests done this last year. Did they do one for food allergies, as well? Fructose malabsorption? Did they have you do an elimination diet and keep a food journal to see if eliminating any foods might help, or if they could find any connections? If you did do an elimination diet, did they ever have you eliminate annatto or gums like xanthan gum and guar gum?

Not that any of these are necessarily the issue, but I know for me, food allergies are a definite complicating factor. I do not get hives or traditional 'allergy' symptoms. However, I tested barely, barely positive to a few foods, and there are a few others that, after keeping a food journal, we also realized were a big no-no if I want my insides to be happy and healthy.

If I eat some of these, my insides are hurt, inflamed, miserable. I get the big D real fast. With one, I get a horrendous pain in my side, every single time, always in the same place. No scan has found a problem there and the doctors don't know why it happens, but it's always the same place, same food.

If they haven't checked you for fructose malabsorption, you might want to investigate that one. It's relatively new to the medical scene, especially to doctors in the USA. The foods that cause the trouble are various grains, fruit, veggies, legumes - a long list of offenders that the web is good for tracking down.

Annatto is a natural dye in tons of foods and often can simply be listed as 'natural dye' or other vague terms, but many people have bad intestinal reactions to it. As it's an intolerance and not an allergy, there is no test for this other than an elimination diet. (Great blog here that lists lots of information about this:

Open Original Shared Link )

If you've been eating gluten free, and eating processed gluten free food, you've probably been upping your intake in gums since they add these to so many of them. Some people have a nasty reaction to these, especially xanthan gum - an intolerance, I believe, not an allergy, so again, no test for it aside from elimination diet. Lots of intestinal badness here, too.

Don't know that any of the above apply, but I figure better to mention them and possibly waste your time and keep quiet when you could have used the information, you know?

So sorry that you're still having to search for answers, but hoping that you can find them soon! Hopefully lots of people here can help with the hunt for a solution. :-)

Simona19 Collaborator

Good luck to you, hon!

A quick question...he wasn't performing the endo FOR celiac disease, right? He's just checking to see what else was going on and thinks celiac disease might have been part of the issue, yes?

I only ask because you've been on the gluten-free diet for a year now, so there'd be nothing to find on the endo for that unless you've been on gluten again for a few months, ya know?

+++I know and he know that too. The reason why I was surprised in his office:

I saw this doctor two weeks after ER visit last year in May. Before I went to ER, I had constant pain on left side of the body for 4 days and also stomach twitch for 20 hours without break, not able to eat, or drink. Just two sips of water made me nauseous, more stomach pain, very weak, palpitation with any small movement, feeling like I have strong flu.

This doctor performed the upper endoscope last year. It was inconclusive, but MARSH1- beginning of celiac disease with ???. I also had mild gastritis and mild acid reflux. When doctor told me about possibility of having celiac disease, I went gluten free right away. I checked something on the internet about celiac and that was it. I didn

Archived

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

  • 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. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      3

      Related issues

    2. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      3

      Related issues

    3. - MogwaiStripe replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

    4. - knitty kitty replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Gluten Issues and Vitamin D


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,255
    • Most Online (within 30 mins)
      7,748

    BeccaLynn
    Newest Member
    BeccaLynn
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jmartes71
      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from sciatica or sibo, ibs or hidden gluten. Im in disability limbo and I should have never been a bus driver because im still suffering and trying to heal with zero income except for my husband. This isnt fare that my health is dictating my living and having ti beg for being revalidation of my disregarded celiac disease. Its an emotional roller coaster I don't want to be on and the medical made it worse.New pcp new gi, exhausted, tired and really fed up. GI doctor NOT girl..
    • Mari
      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
    • MogwaiStripe
      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
    • knitty kitty
      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
    • knitty kitty
      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
×
×
  • 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.