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

Wonder What's Going On Are You The Same As Me?

peacebwu

Recommended Posts

peacebwu Rookie
peacebwu
Posted

Hi - so many good suggestions........basically my blood tests showed, among other foods that I am allergic to wheat, rye, gluten, dairy, egg white, and many more. With IgG of 348 Immune Complex of 173! I took the tests due to colan bleeding and being very, very sick for 3 months.

Found out most of the things I was eating I was allergic to.

Following up on this my internist said......colan infection due to "stress" or antibotics (took only a few before this event). During this particular bout I was eating egg whites (allergic too), rye bread toast each day, wheat bread, and everything else under the sun.

Went to a gastrologist (internal tests), colon dr., allergy dr. NO ONE mentioned celiac. All said IBS and stress!

I called up the lab that did the blood work (nice gave me a complete booklet) and they told me I must eliminate the foods w/three ***. I should not eat anything straight for 5 days (mix up my food). I have had different episodes but not as severe. I take xanax .50 3 times a day (last one at night) and Lonnox if I have stool d (can take up to 4 each day). I can keep things under control with these two drugs.

Happened to catch this web site and after reviewing all the topics all seems very much like what I have. I decided to go again (scheduled nex week) for another blood allergy test to see if it matches what they told me before or???????

Corn is okay for me to eat. I did buy the organic corn flakes. I still eat "some" gluten for I just started on trying to free myself of it. I am allergic to egg whites, but not eggs...I hesitate trying the eggs for it seems all I worry about is "what's next".........

I sometimes wonder if the drs. are aware of this disease? I was a professional business executive, along w/a husband owning businesses. Good education....now retired personal stock day trader.....why I'm saying this is I'm not a push over for these drs. If you tell them you have stress in your live (who doesn't), they say all is caused by stress. If you say you have a stool, bowel probelm, now it's IBS, and so on. I wonder this time around when I say it might be Celiac will they said it's that.

My personal opinion is whatever you say, that's what they test for and that's what you have! So far with all the blogs I believe it's important that we keep track of all the food we eat, any bad reaction take it off our menu. Use the personal help that is available on this web site.....(which is great since it comes from"real" people.)

The more I think about food, the worse I feel......strange but true.....I feel the less food you eat (eat enough to be healthy) but don't go looking for any of the extras.......

Please let me know what you think of my opinions......when I had the biopsy done, my dr. said this could change each time he would take one........also as mentioned above if we eat the same food over and over (even though it agrees w/us) it too when tested could be an allergic food to us.

How do you really know????? Who do you really believe what's wrong?????? No wonder we have stress! Thanks for reading this long, drawn out story, but thought it must be said. Any ideas, suggestions would be appreciated. My food list is very slim! d

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

Hello d,

You might be interested in the answers to these questions:

Open Original Shared Link

Here is some information on testing for Celiac:

Open Original Shared Link

ang1e0251 Contributor
ang1e0251
Posted

You might be surprised by your dr's this time. Many of us have fought with dr's for years to clearly dx us. When asked about celiac disease, they usually balk and say it can't be! Maybe you'll have more luck. I hope so.

So many have been told by dr's "it's all in your head" and /or IBS. Someone said that IBS stands for I Be Stumped. I think that's true. So many dr's have a hard time saying I don't know. I wish more could just admit they are stymied by our condition instead of passing us off with drugs or scrips to the psychiatrist.

So sorry, that was kind of a rant! You can tell my opinion of dr's has deteriorated lately. I do really hope you have a good experience. If you insist on the tests you were referred to, you should be on your way.

  • 2 weeks later...
peacebwu Rookie
peacebwu
Posted
  • Author
You might be surprised by your dr's this time. Many of us have fought with dr's for years to clearly dx us. When asked about celiac disease, they usually balk and say it can't be! Maybe you'll have more luck. I hope so.

So many have been told by dr's "it's all in your head" and /or IBS. Someone said that IBS stands for I Be Stumped. I think that's true. So many dr's have a hard time saying I don't know. I wish more could just admit they are stymied by our condition instead of passing us off with drugs or scrips to the psychiatrist.

So sorry, that was kind of a rant! You can tell my opinion of dr's has deteriorated lately. I do really hope you have a good experience. If you insist on the tests you were referred to, you should be on your way.

mattathayde Apprentice
mattathayde
Posted

i was lucky with Dr's well at least recently, i mentioned i had a lot of D to my doc i went to i think about when i was 16 or 17 (still my ped. i went to since i was 1 month old) he just said "ibs" and didnt do anything about it. a while later i was at my alternative medicine doc and said i had been having D more and more, did some fast muscle testing and said "you have celiac" i went gluten free and every symptom that resolved fits into the celiac exactly, i asked my new general doc about tests and he said "its not worth it to get the tests done now since your eating gluten-free, you will have to eat gluten for a month, make yourself sick and maybe get a result that will only tell you what you already know and give you a 'preexisting condition' to insurance. so if gluten-free works for you stick to it" i was fine with that answer.

it comes down to if doing something makes you feel better than do it, even if it is mental/placebo effect it still is help, remember you mind can make you sick and it can make you better (example: my mom worked in heart surgery and had a patient one time that was convinced she wasnt going to make it through surgery and the patient died on the table, maybe coincidence but i think there was something more there)

-matt

peacebwu Rookie
peacebwu
Posted
  • Author
i was lucky with Dr's well at least recently, i mentioned i had a lot of D to my doc i went to i think about when i was 16 or 17 (still my ped. i went to since i was 1 month old) he just said "ibs" and didnt do anything about it. a while later i was at my alternative medicine doc and said i had been having D more and more, did some fast muscle testing and said "you have celiac" i went gluten free and every symptom that resolved fits into the celiac exactly, i asked my new general doc about tests and he said "its not worth it to get the tests done now since your eating gluten-free, you will have to eat gluten for a month, make yourself sick and maybe get a result that will only tell you what you already know and give you a 'preexisting condition' to insurance. so if gluten-free works for you stick to it" i was fine with that answer.

it comes down to if doing something makes you feel better than do it, even if it is mental/placebo effect it still is help, remember you mind can make you sick and it can make you better (example: my mom worked in heart surgery and had a patient one time that was convinced she wasnt going to make it through surgery and the patient died on the table, maybe coincidence but i think there was something more there)

-matt

peacebwu Rookie
peacebwu
Posted
  • Author

Matt: Thanks I don't know if you got my last note but long story I too agree w/your comments.

I went to health store yesteday and got Ever G light tapioca bread (looks white doesn't taste bad) and Enjoy life nut and gluten free snack bars, Energ G small pasta shells (same as above).....well it's a start, hopefully it will agree and slowly I can add food that agrees w/me! thanks again! d

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

Celiac.com Sponsor (A8-M):


Archived

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

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. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      @rei.b, I understand how frustrating starting a new way of eating can be. I tried all sorts of gluten-free processed foods and just kept feeling worse. My health didn't improve until I started the low histamine AIP diet. It makes a big difference. Gluten fits into opioid receptors in our bodies. So, removing gluten can cause withdrawal symptoms...
    2. captaincrab55
      - captaincrab55 replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Finding gluten free ingredients

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal. My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet. I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free...
    3. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and...
    4. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long? DGP IgG antibodies are produced in response to a partial gluten molecule. This is different than what tissue transglutaminase antibodies are produced in response to. TTg IgA antibodies are produced in the intestines in response to...
    5. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,132
    • Most Online (within 30 mins)
      7,748
    Exhausted-momma
    Newest Member
    Exhausted-momma
    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

    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • 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.