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

Fraud?


Whirlwind

Recommended Posts

Whirlwind Newbie

So, I don't have Celiac disease, I don't think. My mother and sister have been diagnosed with it. (Back in the 90s.) My other sister went through the testing and does not.(A few years ago.) I would get tested but my situation presents a bit of a problem. My mother after finding out that my oldest sister and her had Celiac decided to take gluten out of all of our diets. So, I'm now 25 and I don't eat gluten. I have never eaten gluten. Cross contamination of course. But, never the real thing. So, that makes the testing a bit of a problem seeing as you need to have gluten in your system to test if you have the disease. And I'm not going to mess my body up to get the definitive answer of Celiac.

 

But, I don't eat gluten so I'm in the boat of having to give that information to people when it comes up. And I don't make a big deal out of it. And I also feel like a bit of a fraud. Because, some will ask me what I have and I don't want to explain so someone that paragraph above every time I can't/decide not eat a sandwich.

 

So, I don't know if I fall under the people that are inflicted by a disease I might possibly have or just one of those people that 'have a diet'. And I have said I am Celiac and sometimes Gluten Intolerant. But, I'm neither. Not really. I just am in a weird position.

 

Any thoughts? Is there any way to get out of limbo?


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



Celiac.com Sponsor (A8-M):



captaincrab55 Collaborator

Gene testing may rule out Celiac Disease.

ravenwoodglass Mentor

You mention CC. When you have gotten CC have you reacted? If not then you might want to go ahead and do a gluten challenge and get tested. Have you asked your Mom if you were tested when you were to little to remember?  You could get copies of your medical records and see if there was a reason, other than your two family members being celiac, that your Mom also kept you gluten free. You may have shown signs like tummy issues or growth problems that lead your parents to put you on the diet without testing or you may have had a low positive.

kareng Grand Master

So, I don't have Celiac disease, I don't think. My mother and sister have been diagnosed with it. (Back in the 90s.) My other sister went through the testing and does not.(A few years ago.) I would get tested but my situation presents a bit of a problem. My mother after finding out that my oldest sister and her had Celiac decided to take gluten out of all of our diets. So, I'm now 25 and I don't eat gluten. I have never eaten gluten. Cross contamination of course. But, never the real thing. So, that makes the testing a bit of a problem seeing as you need to have gluten in your system to test if you have the disease. And I'm not going to mess my body up to get the definitive answer of Celiac.

 

But, I don't eat gluten so I'm in the boat of having to give that information to people when it comes up. And I don't make a big deal out of it. And I also feel like a bit of a fraud. Because, some will ask me what I have and I don't want to explain so someone that paragraph above every time I can't/decide not eat a sandwich.

 

So, I don't know if I fall under the people that are inflicted by a disease I might possibly have or just one of those people that 'have a diet'. And I have said I am Celiac and sometimes Gluten Intolerant. But, I'm neither. Not really. I just am in a weird position.

 

Any thoughts? Is there any way to get out of limbo?

 

 

Sure, eat gluten for a few months and then get tested.

CK1901 Explorer

Go talk to an allergist, explain the situation, and discuss whether you should do the gluten challenge. Also i agree you need to ask your mom for your medical records and talk to your primary about whether or not the diet is really necessary for you.

StClair Apprentice

A genetic test will give you more info, and then you can decide better how to proceed. If it indicates that Celiac is very likely, then you may want to just continue the diet. If the results show the chances are less likely then you can commit to six weeks of a cracker a day, and then go through the testing. That's what I would do if it were me.

Whirlwind Newbie

Thank you. Your guys suggestions have been very helpful. I didn't know that you could get genetic testing first. I thought it was strictly the gluten challenge and  biopsies and similar to diagnose (and seeing as what I said because about not having gluten in my diet).

 

I have talked with my mother before and she put us all on the diet because it easier for the household to eat all the same food and she became a bit of a health nut after it. She also took out sugar our diets because her family had a history of diabetes.

 

Again, thanks very much. :D


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



Celiac.com Sponsor (A8-M):



Googles Community Regular

The genetic testing wont tell you if you have celiac, but it will tell you if you have one or both of the two identified genes that cause celiac. 

Sammykins Newbie

It will also tell you the likelihood of you having celiac by percentage (or at least my test did).

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,929
    • Most Online (within 30 mins)
      7,748

    Mike Rowicki
    Newest Member
    Mike Rowicki
    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

    • lehum
      Hi and thank you very much for your detailed response! I am so glad that the protocol worked so well for you and helped you to get your health back on track. I've heard of it helping other people too. One question I have is how did you maintain your weight on this diet? I really rely on nuts and rice to keep me at a steady weight because I tend to lose weight quickly and am having a hard time envisioning how to make it work, especially when not being able to eat things like nuts and avocados. In case you have any input, woud be great to hear it! Friendly greetings.
    • Hmart
      I was not taking any medications previous to this. I was a healthy 49 yo with some mild stomach discomfort. I noticed the onset of tinnitus earlier this year and I had Covid at the end of June. My first ‘flare-up’ with these symptoms was in August and I was eating gluten like normal. I had another flare-up in September and then got an upper endo at the end of September that showed possible celiac. My blood test came a week later. While I didn’t stop eating gluten before I had the blood test, I had cut back on food and gluten both. I had a flare-up with this symptoms after one week of gluten free but wasn’t being crazy careful. Then I had another flare-up this week. I think it might have been caused by Trader Joe’s baked tofu which I didn’t realize had wheat. But I don’t know if these flare-ups are caused by gluten or if there’s something else going on. I am food journaling and tracking all symptoms. I have lost 7 pounds in the last 10 days. 
    • trents
      Welcome to the forum, @Hmart! There are other medical conditions besides celiac disease that can cause villous atrophy as well as some medications and for some people, the dairy protein casein. So, your question is a valid one. Especially in view of the fact that your antibody testing was negative, though there are also some seronegative celiacs. So, do you get reactions every time you consume gluten? If you were to purposely consume a slice of bread would you be certain to develop the symptoms you describe?
    • klmgarland
    • DebJ14
      I only went on the multi vitamin AFTER a couple of year of high dose, targeted supplementation resolved most of my deficiencies.  I was on quite a cocktail of vitamins that was changed every 6 months as my deficiencies resolved.  Those that were determined to be genetic are still addressed with specific doses of those vitamins, minerals and amino acids. I have an update on my husband and his A Fib.  He ended up in the hospital in August 2025 when his A Fib would not convert.  He took the maximum dose of Flecainide allowed within a 24 hour period.  It was a nightmare experience!  They took him into the ER immediately.  They put in a line, drew blood, did an EKG and chest Xray all within minutes.  Never saw another human for 6 hours.  Never got any results, but obviously we could see he was still in A fib by watching the monitor.  They have the family sign up for text alerts at the ER desk.  So glad I did.  That is the only way we found out that he was being admitted.  About an hour after that text someone came to take him to his room on an observation floor.  We were there two hours before we saw another human being and believe it or not that was by zoom on the TV in the room.  It was admissions wanting to know his vaccine status and confirming his insurance, which we provided at the ER desk.  They said someone would be in and finally a nurse arrived.  He was told a hospitalist was in charge of his case.  Finally the NP for the hospitalist showed up and my husband literally blew his stack.  He got so angry and yelled at this poor woman, but it was exactly what he needed to convert himself to sinus rhythm while she was there.  They got an EKG machine and confirmed it.  She told him that they wanted to keep him overnight and would do an echo in the morning and they were concerned about a wound on his leg and wanted to do a doppler to make sure he did not have a DVT.  He agreed.  The echo showed everything fine, just as it was at his annual check up in June and there was no DVT.  A cardiologist finally showed up to discharge him and after reviewing his history said the A Fib was due to the Amoxicillan prescribed for his leg wound.  It both triggers A Fib and prevents the Flecainide from working.  His conversion coincided with the last dose of antibiotic getting out of his system.  So, make sure your PCP understands what antibiotics you can or cannot take if susceptible to A Fib.  This cardiologist (not his regular) wanted him on Metoprolol 25 mg and Pradaxa.  My husband told him that his cardiologist axed the idea of a beta blocker because his heart rate is already low.  Sure enough, it dropped to 42 on the Metoprolol and my husband felt horrible.  The pradaxa gave him a full body rash!  He went back to his cardiologist for follow up and his BP was fine and heart rate in the mid 50's.  He also axed the Pradaxa since my husband has low platelets, bruises easily and gets bloody noses just from Fish Oil  He suggested he take Black Cumin Seed Oil for inflammation.  He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation.   Oh and I forgot to say the hospital bill was over $26,000.  Houston Methodist!  
×
×
  • 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.