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

Doctor Wont Test, Help!

liv

Recommended Posts

liv Newbie
liv
Posted

Hello,

Im totally new to this disease. About a week ago I started suspecting I could have developed celiac disease by placing all the symptoms together, at first i thought it was lactose intolerance.

I moved to a new country about 3-4 months ago. My diet consists basically of morning cereal with fruits and milk, bread with cheese, and some rice and vegetables for lunch some chicken or fish but almost no meat. Sometimes i switch lunch for dinner and i eat bread for lunch. I don't drink soft drinks, just water. At night i eat dry fruits and tea.

I started feeling really bad about 1 month ago, every time after lunch i would get headaches and feel indisposed and it would be difficult to think.

About 2 weeks ago i got really bloated, i gained 3 kilos literally from night to day, LITERALLY. I was like a 7 months pregnant woman. My stomach would hurt every time after eating something. I tried eno and gas medications but it didn't help, and i would put a hot water bag to try and ease the pain.

I suspected it could be lactose and i cut it from my diet and went to see a doctor. I felt immediately better.

At the doctor he said i should cut lactose and gluten from my diet because the food from my country and from here is different, he didn't say i am celiac and he didn't ask for further exams. 

I feel better but i would like to be tested because this is s a huge change. My insurance refuses to let me be tested, saying that the doctor's word is final and i don't need to be tested for celiac disease, i just need to follow the diet.

How should i proceed? should i just accept it like this and keep a gluten free diet?

Thank you

 

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

Celiac.com Sponsor (A8-M):


1desperateladysaved Proficient
1desperateladysaved
Posted

Maybe you could check with another doctor?  Did they also check for parasites?  It seems better to have a diagnosis, but if you want one, you need to wait until the testing is done to go gluten free.  But the final test for a gluten free diet is always to gluten free and see if it works.    You could do that if nothing else works for you.

nora-n Rookie
nora-n
Posted

I would say it is important to get tested, otherwise it is not definite and you might let gluten sneak into your life sometimes in the future....

what kind of country is that, is it europe, mediterranean, asia?

umsami Rookie
umsami
Posted

Can you try a different doctor?

 

Also, no idea where you are, but perhaps you could try the CeliacSure test from Gluten Pro? Open Original Shared Link

 

If you got a positive result on that, it might make a physician more likely to do further testing.

liv Newbie
liv
Posted
  • Author

Hello, thank you for your reply.

I am in Canada. My insurance is not helping they said if i wanted to get tested I should "call my country" or pay from my pocket. The doctors here are really expensive and hard to get an appointment.

I went out with some friends and since i didnt have a diagnose they pressured me to eat normal food because there was no gluten-free menu and they thought it was not serious. I thought i could give it a try to see if i would feel bad and i did. I ate a pizza at night and some ceral with milk in the morning. Had diarrhea and stomach aches for two days.

I just cut  both lactose and gluten from my diet now, until I can see a doctor again. I know it gives a false positive in the test, but i don't know whatelse i can do.

I am really upset with this whole situation and with having to beg to get tested.

umsami Rookie
umsami
Posted

Hello, thank you for your reply.

I am in Canada. My insurance is not helping they said if i wanted to get tested I should "call my country" or pay from my pocket. The doctors here are really expensive and hard to get an appointment.

I went out with some friends and since i didnt have a diagnose they pressured me to eat normal food because there was no gluten-free menu and they thought it was not serious. I thought i could give it a try to see if i would feel bad and i did. I ate a pizza at night and some ceral with milk in the morning. Had diarrhea and stomach aches for two days.

I just cut  both lactose and gluten from my diet now, until I can see a doctor again. I know it gives a false positive in the test, but i don't know whatelse i can do.

I am really upset with this whole situation and with having to beg to get tested.

If you're in Canada, then definitely try the CeliacSure test.  "CELIACSURE™ is a Medical Device that is licensed by Health Canada and meets the stringent European medical device requirements for a home test for Celiac disease (CE marked according to the IVD directive 98/79EC)"

justa Newbie
justa
Posted

This sounds more like gastrophorisis to me than Celiac.

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.

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


  • Member Statistics

    • Total Members
      131,546
    • Most Online (within 30 mins)
      7,748
    KimberlyAnne76
    Newest Member
    KimberlyAnne76
    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.