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

Newbie Here. Need To Vent.


aileendq

Recommended Posts

aileendq Newbie

So I was diagnosed with Celiac about fourteen years ago after I had my son. Since then, I've been glutened countless times (and each time I learned from it, I swear). So now I am hyper-careful with what and how I eat.

However, it seems that lately, ANYTHING I eat becomes a digestive "issue". It has gotten to the point that I I don't eat out and I tend not to socialize as much as I used to.

My rant involves several things. One is that I visted the doctor several months ago complaining of digestive issues, and they did bloodwork to "confirm" the Celiac diagnosis, which was done out of state and many, mnay years ago. Of course, the blood test came back negative. (To which I responded, "Fine, let's go have a couple of slices of pizza and then I'll hang around in your office for the next hour. When I'm doubled over on the floor and/or puking my guts out you can re-test me!" You'd think they would let a grown woman in her late thirties tell them what's up, but no. BTW, it was only a blood test- no other tests were done.

My second, and last, rant involves the sheer cost of gluten free foods. 'Nuff said.

Thank you for "listening".

Oh, yeah, what's the deal with gluten in cosmetics and toilettries?!?!

Gracias!


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



Celiac.com Sponsor (A8-M):



MDRB Explorer

Grrrrr

Aren't doctors meant to be smart?!

If you have been gluten free for fourteen years of course your blood tests would be negative (even if you slip up every now and then).

I had a similar issue when I went for a diagnosis, I had already been gluten lite for about six months when I went to get blood tests, of course the tests came back negative and the doctor did not want to send me to a gastroenterologist to get the biopsy. I did some internet research and went back to the doctor and insisted on the biopsy.

As for the price of gluten-free foods I mainly stick to foods that are fresh and naturally gluten free. The only processed things I buy are corn tortillas and gluten free pasta shells.

ravenwoodglass Mentor

Doctors can be real idiots when it comes to celiac, and we suffer for it. Please don't let them poison you for a few months to prove something you already know. I know if a doctor ever tries it with me I will be bringing in a letter from my lawyer stating that they will be held responsible for any monetary loss and for compensation for pain and suffering. If they won't sign it I won't challenge, period. Whoops sorry got into a bit of a rant there myself.

Your last line may be the reason why you are suffering. Celiac involves an autoimmune reaction, that reaction can be started by even the tiniest amount of a gluten containing substance. The autoimmune response starts the second that gluten comes into contact with mucous membrane, that membrane can be in the mouth, gut, nose, eyes, vaginal tissues etc. Your system doesn't care where the gluten enters your system it just knows it is there and will react. That is the reason why we need to eliminate it from our toiletries and shampoos, makeup and even things like cat litter and pet foods (they eat and then lick themselves and us).

You have come to one of the best places to ferret out hidden gluten sources that doctors just don't think to mention.

Also many of us have developed a reaction to the protein in dairy products and soy. You may want to try and elimate them, one at a time starting with the dairy.

Also do not trust any med or supplement that is not specifically labeled gluten free. Check all meds, the generics need to be checked with the maker every time you refill as they can change binders at will. The FDA in all their 'wisdom' don't have any label or allergin regs when it comes to drugs so they are one of the riskiest substances we come into contact with. Shame on the FDA for that one.

I hope you are able to figure out what is getting you soon and that you are soon feeling better than ever.

skinnyasparagus Apprentice
Doctors can be real idiots when it comes to celiac, and we suffer for it. Please don't let them poison you for a few months to prove something you already know. I know if a doctor ever tries it with me I will be bringing in a letter from my lawyer stating that they will be held responsible for any monetary loss and for compensation for pain and suffering. If they won't sign it I won't challenge, period. Whoops sorry got into a bit of a rant there myself.

Your last line may be the reason why you are suffering. Celiac involves an autoimmune reaction, that reaction can be started by even the tiniest amount of a gluten containing substance. The autoimmune response starts the second that gluten comes into contact with mucous membrane, that membrane can be in the mouth, gut, nose, eyes, vaginal tissues etc. Your system doesn't care where the gluten enters your system it just knows it is there and will react. That is the reason why we need to eliminate it from our toiletries and shampoos, makeup and even things like cat litter and pet foods (they eat and then lick themselves and us).

You have come to one of the best places to ferret out hidden gluten sources that doctors just don't think to mention.

Also many of us have developed a reaction to the protein in dairy products and soy. You may want to try and elimate them, one at a time starting with the dairy.

Also do not trust any med or supplement that is not specifically labeled gluten free. Check all meds, the generics need to be checked with the maker every time you refill as they can change binders at will. The FDA in all their 'wisdom' don't have any label or allergin regs when it comes to drugs so they are one of the riskiest substances we come into contact with. Shame on the FDA for that one.

I hope you are able to figure out what is getting you soon and that you are soon feeling better than ever.

I'd like to thank you sincerely for what you said there. I just came home from my physician's office to look at the results from my ultrasound. My response was a stupid grin after flipping through papers with, "Oh everything seems normal. It could have been just a virus irritating your liver. I mean we could do it again if you want but it appears all normal."

Normal? I get cramps, diarrhea, bloody stool when I get constipated and put in a lot of effort, gas bubbles that nearly send me ground sprawling, I regurgitate after I eat half of the time even with my digestive enzymes, hives when I get contaminated, trouble keeping on weight, and bloody blisters on my tongue. Yeah, it's ALLLLLLL normal.

But ravenwoodglass, thank you for saying words to remind me that I am not crazy and that the physicians are quite ignorant and incompetent when it comes to celiac's disease.

End of my rant.

home-based-mom Contributor

Normal? I get cramps, diarrhea, bloody stool when I get constipated and put in a lot of effort, gas bubbles that nearly send me ground sprawling, I regurgitate after I eat half of the time even with my digestive enzymes, hives when I get contaminated, trouble keeping on weight, and bloody blisters on my tongue. Yeah, it's ALLLLLLL normal.

End of my rant.

I keep wanting to say this to so many with ignorant uncaring doctors.

Ask your physician if it's so normal, is that how life is for him/her? If not would he/she care to trade places with you?

HMMMMMMMMMMM?

Just a guess but probably not. :ph34r:

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. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      My journey is it gluten or fiber?

    2. - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Issues before diagnosis

    3. - trents commented on Jefferson Adams's article in Other Diseases and Disorders Associated with Celiac Disease
      6

      Celiac Disease Patients Face Higher Risk of Systemic Lupus

    4. - knitty kitty replied to EndlessSummer's topic in Food Intolerance & Leaky Gut
      2

      Dizziness after eating green beans?

    5. - sha1091a posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Issues before diagnosis

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

    • Total Members
      132,689
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
    • sha1091a
      I found out the age of 68 that I am a celiac. When I was 16, I had my gallbladder removed when I was 24 I was put on a medication because I was told I had fibromyalgia.   going to Doctor’s over many years, not one of them thought to check me out for celiac disease. I am aware that it only started being tested by bloodwork I believe in the late 90s, but still I’m kind of confused why my gallbladder my joint pain flatulent that I complained of constantly was totally ignored. Is it not something that is taught to our medical system? It wasn’t a Doctor Who asked for the test to be done. I asked for it because of something I had read and my test came back positive. My number was quite high.Are there other people out here that had this kind of problems and they were ignored? 
    • trents
      Welcome to celiac.com, @EndlessSummer! Do you react to all vegetables or just specific kinds or families of them? What you describe with green beans sounds like it has an anaphylaxis component. Like you, walnuts are a problem for me. They will often give me a scratchy throat so I try to avoid them. Does it matter if the vegies are raw or will-cooked in how you react to them?
×
×
  • 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.