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

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

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


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.

  • 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. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    2. - knitty kitty replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    3. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    4. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,258
    • Most Online (within 30 mins)
      7,748

    Tdodge
    Newest Member
    Tdodge
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • suek54
      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later.  The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied, no chance if recovery there. But I am in touch with some secondaries, so something to bear in mind. .  Niacin B3 Very interesting too. Must have a good read about that.  Im sure lots of questions will arise as I progress with dermatitis herpetiformis. In the mean time, thanks for your help.
    • knitty kitty
      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
    • suek54
      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
×
×
  • 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.