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

Convincing Someone To Get Tested


angst2amity

Recommended Posts

angst2amity Rookie

Hi

I believe that I may have Celiac Sprue. I think that my husband has it worse. How did we find each other and what will it do to our kids?!?

My husband's symptoms:

IBS - constipation, D, painful gas

actual wheat allergy - so he takes Claritin(?)

heart pain of unknown origin

rosacia

high cholesterol

arthritis

MY REAL QUESTION IS:

How do you, or have you, convinced someone to go for testing when half of the time doctors think you are nuts?

Secretly send in his stool? :blink: (he he)

How do you say - I think you have this disorder, you should talk to your doctor - chances are that they will laugh at you, proscribe you with anti-psychotics, tell you to quit reading things online, it's all in your head, etc.

Any pointers?

I think my mother may have it as well. I think that she just prefers to take Rolaids, Depression Meds, Hypertension Meds, Meds, Meds rather than look at the root cause.


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



Celiac.com Sponsor (A8-M):



Riayn Newbie

I would try to convince your husband to go in and demand to be tested, particularly if he has been diagnosed with IBS and has never been tested for celiac's before. Well, that is what I am going to do on Monday.

It is my understanding that a diagnoses of IBS is given after all other testing has ruled out any of the other GI diseases.

I can let you know on Monday how well just demanding to be tested works. Hopefully, they will not write it off as stress, like they have done to me many times in the past.

Best of luck to you and your husband.

ravenwoodglass Mentor

How to convince him....how about you pull another chair up to the computer and have him look at the posts and signatures that are here. I got my DH to be tested when I accompanied him to his colonoscopy and bullied the GI doctor into doing the test. He was showing far less symptms than your husband. Imagine their surprise when he came back positive. Point out to him also that in a lot of countries the test is a routine test given to everyone as a part of their regular physical. Sometimes people will resist testing because deep down they know they have it and fear the change in diet and lifestlye that it requires, here again reading other posts can be very reassuring. Being celiac is not the end of anything good or fun. It is the beginning of a pain free and healthy existance. I would have quit gluten just to get rid of my tummy pain and 'IBS' the remission of my arthritis and other problems were a great bonus.

mamaw Community Regular

I've been trying to get other family members tested for a couple of years, to no avail... I feel badly but it's like the horse ---you can show him the water but he may not drink....as for many of us ,we never got the blessings of a dx's but we tried on our own & the diet helped us dramaticly so we stay on the diet.... I did the endo & colonoscopy first & it was neg. I then did the blood work & still the doctor said your are fine. I had no villi damage so I guess that is all he was concerned with. I then had the dna testing & have the genes so I'm very glad I'm gluten-free on my own.

I agree with Ravenwoodglass set him down with the computer & let him do the research for himself. One thing I know for sure is I never heard of this diet hurting anyone even if they were not intolerant or full-blown celiacs.So it can't hurt by trying the diet.

good luck

mamaw

Nancym Enthusiast

If your husband doesn't want to get tested, would he just trial the diet for awhile and see if his symptoms improve? That was essentially how I went about it. My IBS disappeared in 2 days. Other things took longer to improve but for me, that result was almost immediate.

That will sort of disqualify you from doing the blood test/biopsy route because it might let you heal enough that it wouldn't test positive but you could always go to enterolab.com for a stool test later if you wanted.

daffadilly Apprentice

I have a grown son.... IMO chances are nil you are going to get him to the doctor to demand tests that the doc is unfamiliar with. Your best chance I think, is to order the tests from enterolab.com

not that I am too happy with them at the moment as my granddaughter's test came back negative, when I definitely know she has a problem...

ravenwoodglass Mentor

Hi I just wanted to add one more thing about this:

"actual wheat allergy - so he takes Claritin(?)"

I am hoping that he is avoiding wheat even if not gluten. If he has an actual histamine response reaction from wheat (or any other substance) continued exposure could have a sudden change to a life threating response. This can happen very suddenly and there is no knowing when his system will click into an anaphyleptic (sp) reaction that would have the potential to close down his airway and much more. It of course does not happen to everyone but it is a risk if he keeps coming in contact with wheat. If he has a allergy doctor that diagnosed this he may want to ask about an epipen.


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



Celiac.com Sponsor (A8-M):



angst2amity Rookie

Thank you all for your input. As I have been reading posts, I have been sharing info with him. He seems to have the more blatant symptoms. I think finding out where the chest pain comes from would be a relief for him. I spoke to him and I said why I think he should be tested. He agreed that being Celiac seemed to fit. He said maybe he would agree to testing but he didn't want a biopsy done. He said he would do the blood test or a stool test - I would think he could do this with his doctor's office - we will see. I think he would be willing to go gluten-free if I prepare all meals and there is a good variety - who doesn't love steak and potatoes!! He's afraid he will only be able to eat rice!

Thanks Again!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,551
    • Most Online (within 30 mins)
      7,748

    Newest Member

    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
      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
      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
      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
      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
      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.