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

peacebwu

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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

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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

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    • trents
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      The blood tests you had done are not the main ones. The two main ones are the "Total IGA" (to check for IGA deficiency) and the "TTG-IGA". Current guidelines for the "gluten challenge" when people have been gluten free for a significant time period are the daily consumption of at least10g of gluten (about the amount in 4-6 slices of wheat bread) for at least two weeks leading up to the day of the blood draw. That should give you some perspective.
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Thank you, really.  I took a test for DGP-IgA and DGP-IgG. Effectively, it is not enough to discard Celiac Disease. I was consuming gluten until then, I only started gluten-free some days ago, when the symptoms became horrible and now I feel considerably better, which is a second confirmation that gluten is the main problem. It's been more than 4 years I have the same suspect, when I first thought gluten was causing me problems, I made a gluten-free diet for a year, I felt really good as never before. However, neither I or my parents were well informed about Celiac disease, so none of us tried to make further exams. My father suffer digestive problems and other members of my family as well. Unfortunately, no one have ever been tested for Celiac disease. I'll have to restart eating gluten in the next weeks, so I can make a serious blood test in laboratory, hopefully between two or three months.
    • trents
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      As Scott said, in order for celiac disease testing to be valid, you need to be eating generous amounts of gluten on a regular basis for weeks or months before the blood draw. The blood tests are designed to detect antibodies that the immune system produces in response to the ingestion of gluten. It takes time for them to build up in the blood to detectable levels.
    • Scott Adams
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Scott Adams · Posted

      Based on what you've described, it is absolutely crucial that you pursue further medical exams for Celiac Disease and related conditions with a gastroenterologist. Your symptoms—especially the worsening fatigue, loss of muscle mass, neurological symptoms like migraines, and palpitations, coupled with being underweight—are significant red flags that extend beyond typical IBS. The negative home test is not reliable, particularly given your concern about sample contamination and the fact that you were likely not consuming sufficient gluten at the time for the test to be accurate, which is a common issue. While probiotics like Bifidobacterium Infantis can support gut health, they cannot resolve an autoimmune response to gluten or heal intestinal damage caused by Celiac Disease. Your declining blood test results, even if still "in range," further indicate a trend that needs a doctor's investigation. Please do not hesitate to seek a specialist; a formal diagnosis is the first step toward getting the correct treatment, allowing your body to heal, and finally addressing your weight and overall health concerns. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Buckwheat

      By Scott Adams · Posted

      I would only add that cross contamination with wheat may still be a possibility, so it's still best to seek out buckwheat that is labeled "gluten-free."
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