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


peacebwu

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peacebwu Rookie

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

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

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
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

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
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

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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      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
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      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing from a visible layer of shredded cereals that had not been removed. After a quick web research I learned that these mushrooms are commonly cultivated on a cereal-based medium like wheat bran. I hope that info his helpful to someone.
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      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
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