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

New And Undiagnosed

Gwensmom

Recommended Posts

Gwensmom Newbie
Gwensmom
Posted

Hello,

I have been looking around the site and trying to get a sense of everything.

I have at least gluten sensitivities, but not sure if it is celiac.

Both run in my family.

I would like to know for sure if it is celiac, but I don't tink I could handle the gluten challenge.

I am not so sure if it really matters. Maybe to other people, but I know that I am better off staying off gluten.

Is there any other way besides eating gluten for a couple months before getting tested?

I know some people here have mentioned the diagnosis doesn't matter and others think it does.

I'd like to hear why or why not.

 

 

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

Celiac.com Sponsor (A8-M):


Scott Adams Grand Master
Scott Adams
Posted

On the negative side, a formal diagnosis can make health and life insurance more expensive, and harder to get in some cases. 

Gwensmom Newbie
Gwensmom
Posted
  • Author

I did not think about it from an insurance point of view. That is a good point. Thanks.

mamaw Community Regular
mamaw
Posted

some  people  just  need  to know  for  positive because  that  is  just  the  way  they roll, if  a  doctor confirms  then it becomes  more  "REAL" to  them  &  their  brain  understands  but  when no  formal dx's  , there is after  awhile  that they  become  skeptical  if  they  truly  have  the  disease...the gluten-free  lifestyle  is  or  does not  become  easy for some...The  mind  is a  great tool but  sometimes  it likes  to play  tricks  on us.....

Some  have  gone  gluten-free  without  any testing &  after  years  still have  problems  only to find out  it  was  another  illness causing  problems...

One  thing  about  going  gluten-free  without  a formal dx's  is  that  not  eating  wheat  has  never  killed  anyone!!!!

SMRI Collaborator
SMRI
Posted

On the negative side, a formal diagnosis can make health and life insurance more expensive, and harder to get in some cases. 

 

That is not true at all.  With the ACA they have removed rating for preexisting conditions as well as denying for preexisting conditions   It is not a reason to get diagnosed.

Scott Adams Grand Master
Scott Adams
Posted

Thanks SMRI, but life insurance is a different story for sure...and in many countries it would still affect health insurance.

Scott Adams Grand Master
Scott Adams
Posted

PS - I am in my 40's, and for my life insurance I have been paying a premium amount of a person in their 50-60's, due to my diagnosis.

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

Celiac.com Sponsor (A8-M):


SMRI Collaborator
SMRI
Posted

Yes, life insurance might be an issue, but not always.

nvsmom Community Regular
nvsmom
Posted

I think people like to have a diagnosis because it makes it "easier" to stay gluten-free.  Knowing you can't cheat, once or ever, helps some people stay completely gluten-free compared with those who "think" they should be gluten-free.  For example, I know that sugar does bad things to my body but I have a hard time staying away from it; staying gluten-free requires no willpower at all because I know I can't have it.

 

... and my life insurance costs quite a bit more than my husband's who has a larger policy but no health issues.   I have found life insurance to be more. As a Canadian, I don't know it it would affect health insurance .

Gwensmom Newbie
Gwensmom
Posted
  • Author

I can understand the need to know that I definitely can't have it versus thinking I can't. I am fine without the formal diagnosis. It is going to be tricky with my mother-in-law because she is one for testing everything and she is likely to just believe that it is a choice.

My husband thinks that I should not get tested because of having to eat all the gluten.

Thanks for all the input.

SMRI Collaborator
SMRI
Posted

So just tell your MIL you have Celiac and leave it at that.  

Gwensmom Newbie
Gwensmom
Posted
  • Author

I may have to do that. My husband also told me to just bring my own food because she will not like  having to be careful of cross contamination. She won't get mad at me but she will get mad that she has to do things different.

BlessedMommy Rising Star
BlessedMommy
Posted

You should always bring your own food, unless you have a trained celiac chef cooking for you. 

 

Good point on the life insurance, I guess that there are some benefits to staying undiagnosed. My rate is pretty good. I did tell the guy that I had a TIA, but that it was food related and that the doctor had advised me to avoid gluten to prevent future problems.

 

For me, I don't have a very difficult time living strictly, because my symptoms are severe and scary. Diagnosis isn't an option, because the gluten challenge could kill me. Everybody has a different situation, though. I think that it's better to get a DX, but since it's not an option for me and live just as if I got handed a note from the doctor.

Gwensmom Newbie
Gwensmom
Posted
  • Author

I guess not. I am still learning what to buy and not to buy. There are so many things that I would never think about~ like nuts.

At this point, I can't imagine making it through 2-3 months of eating gluten.

SMRI Collaborator
SMRI
Posted

I may have to do that. My husband also told me to just bring my own food because she will not like  having to be careful of cross contamination. She won't get mad at me but she will get mad that she has to do things different.

 

You should bring your own food anyway.  It's just not worth being sick.  I ate at a place on Friday where the owner's mom is Celiac, she seemed knowledgeable, mostly soups and sandwiches,  understood CC, the whole 9 yards.....ok, should have checked the food out more but I had a bowl of her soup, it was fantastic, but, found out she used cream of mushroom soup--ok, but upon further investigation, the soup was not gluten-free.  To her credit she was appalled, but still...

Gwensmom Newbie
Gwensmom
Posted
  • Author

You should bring your own food anyway.  It's just not worth being sick.  I ate at a place on Friday where the owner's mom is Celiac, she seemed knowledgeable, mostly soups and sandwiches,  understood CC, the whole 9 yards.....ok, should have checked the food out more but I had a bowl of her soup, it was fantastic, but, found out she used cream of mushroom soup--ok, but upon further investigation, the soup was not gluten-free.  To her credit she was appalled, but still...

That is true. I was at the store last night and some foods that I always thought were safe turned out not to be.

nvsmom Community Regular
nvsmom
Posted

That is true. I was at the store last night and some foods that I always thought were safe turned out not to be.

Yes... A few years ago a neighbor offered my boys Rice Krispie squares and I declined because they have gluten. She argued with me that they don't and that she made them for her DIL (or was it grandchild) so she knew it was safe... Um, no.  This was before the gluten-free Brown Rice Krispies had shown up in Canada.

1desperateladysaved Proficient
1desperateladysaved
Posted

A diagnosis might help other people believe you really have celiac like unsupportive family members or friends.  They may decide to get tested.  For that reason I sometimes wish I had done more than a genetic test right away.  I felt unable to do a gluten challenge, so I haven't wished to eat gluten again.  It sounds like you have celiac in your family, so you are somewhat more likely to have it than someone without it. 

Gwensmom Newbie
Gwensmom
Posted
  • Author

Yes... A few years ago a neighbor offered my boys Rice Krispie squares and I declined because they have gluten. She argued with me that they don't and that she made them for her DIL (or was it grandchild) so she knew it was safe... Um, no.  This was before the gluten-free Brown Rice Krispies had shown up in Canada.

I did not know regular Rice Krispies had gluten. I don't buy them, but good to know if I decide I want to make treats.

 

A diagnosis might help other people believe you really have celiac like unsupportive family members or friends.  They may decide to get tested.  For that reason I sometimes wish I had done more than a genetic test right away.  I felt unable to do a gluten challenge, so I haven't wished to eat gluten again.  It sounds like you have celiac in your family, so you are somewhat more likely to have it than someone without it.

The reason I think it might be good is for other family members. My MIL already thinks I am wacky because of the way I cook and eat. But, she also thinks I am getting too thin so if there is a medical reason she might be better about it.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748
    Blough
    Newest Member
    Blough
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.