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

Is What The Doc Said True?

bunnybaby

Recommended Posts

bunnybaby Newbie
bunnybaby
Posted

I am in the UK and my GP is convinced I am celiac. I have been gluten free for about 8 months and know my body cannot take wheat.

I have just come back from the doctor at the hospital where I had been referred for a biopsy as my bloods where negative. (in the UK).

The doc said my rash was nothing like DH despite lookinhg like it to me and my GP and that it could not be as mine are painful and irritating and DH is never painful only itchy. Is this true as I had read it was painful?

He also said that as my symptoms were massivly improved by my diet change then it could not be celiac as in his experieince celiacs rarely if ever have symptoms ( is this true to?) and see no change when they give gluten up?????.

He seemed to think that I just wanted to be celiac and said that if I went back on gluten for 6 months he would do the biopsy but he was hap;py to say that I am not celiac. I said no way as it would kill me to do that. And that was it - dismissed!

I am not sure what to make of it. I do not want to be celiac but I don't like being seen as a nutter either really. He was nice enough but very patronising. I will just continue to manage it myself but I was /am convinced I am celiac due to my symptoms, improvement on giving gluten up and the effect of even the slightest bit in my system now.

I just wanted to know if all he said to me is correct?

Thanks so much.

Ruth

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

Celiac.com Sponsor (A8-M):


KathiSharpe Apprentice
KathiSharpe
Posted

Time to fire your doctor.

bunnybaby Newbie
bunnybaby
Posted
  • Author
Time to fire your doctor.

Thank you! I think youmay be right :lol:

JillianLindsay Enthusiast
JillianLindsay
Posted

What?! Your DR is grossly misinformed. My DR said that Celiac doesn't cause vitamin B12 and Iron deficiency (which is one of the main indicators). DR's are smart, but they can't (and don't) know everything, that's for sure!

I don't have DH so I can't comment on that, however the primary reason for people to go gluten-free is because they see a reduction (or even elimination) of their symptoms! Time to ask for a referral to a GI doc or if possible a DR that specializes in celiac disease.

If you want (or need) medical confirmation that you have celiac disease then go back on gluten for the biopsy. If you feel better on the diet and don't care about (or don't feel you need) confirmation, then just keep on doing what is making you feel better :)

Good luck & I hope you find better informed DRs in the future!

Jillian

I am in the UK and my GP is convinced I am celiac. I have been gluten free for about 8 months and know my body cannot take wheat.

I have just come back from the doctor at the hospital where I had been referred for a biopsy as my bloods where negative. (in the UK).

The doc said my rash was nothing like DH despite lookinhg like it to me and my GP and that it could not be as mine are painful and irritating and DH is never painful only itchy. Is this true as I had read it was painful?

He also said that as my symptoms were massivly improved by my diet change then it could not be celiac as in his experieince celiacs rarely if ever have symptoms ( is this true to?) and see no change when they give gluten up?????.

He seemed to think that I just wanted to be celiac and said that if I went back on gluten for 6 months he would do the biopsy but he was hap;py to say that I am not celiac. I said no way as it would kill me to do that. And that was it - dismissed!

I am not sure what to make of it. I do not want to be celiac but I don't like being seen as a nutter either really. He was nice enough but very patronising. I will just continue to manage it myself but I was /am convinced I am celiac due to my symptoms, improvement on giving gluten up and the effect of even the slightest bit in my system now.

I just wanted to know if all he said to me is correct?

Thanks so much.

Ruth

bunnybaby Newbie
bunnybaby
Posted
  • Author

Thanks I just felt so low and cross when I came out and I just needed to hear what I know already from someone else.

Thanks

Ruth

ravenwoodglass Mentor
ravenwoodglass
Posted

Your doctor is horribly ill informed. His misconceptions about celiac disease are the worst I have ever heard. I have DH and yes it can be extremely painful as well as itchy. If you can find a new doctor please do so but if your healing well on the diet keep it up. That is the best test there is. Your body is clearly showing you the answer that doctor could not.

tiggsy Newbie
tiggsy
Posted

In my opinion the doctor at the hospital needs retraining. I personally would write to the management at the hospital and tell them that he should not be allowed to do anything connected with diagnosing celiac disease until he has been retrained. In my view he should be struck off, but i guess that's too much to hope for.

On the other hand, at least your gp seems to know his stuff. Unfortunately, sending you to another hospital for this sort of check will cost him, but if you do get sent elsewhere, remember that you must be on a normal gluten rich diet for several weeks before the test to have a chance of it being accurate.

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

Celiac.com Sponsor (A8-M):


bunnybaby Newbie
bunnybaby
Posted
  • Author

Thank you both, i feel so much better to know that I was right about him. It makes you doubt yourself when you think they are the one you are trusting to be expert. Thanks everyone for replying it really helps.

ang1e0251 Contributor
ang1e0251
Posted

The doc said my rash was nothing like DH despite lookinhg like it to me and my GP and that it could not be as mine are painful and irritating and DH is never painful only itchy. Is this true as I had read it was painful?

My DH was so painful it repeatedly woke me out of my sleep at night.

He also said that as my symptoms were massivly improved by my diet change then it could not be celiac as in his experieince celiacs rarely if ever have symptoms ( is this true to?) and see no change when they give gluten up?????.

Look at just about any post on this website and tell me if none of us had symptoms and improvement on the gluten-free diet. Why in the world would we live such a restrictive lifestyle if not?

He seemed to think that I just wanted to be celiac and said that if I went back on gluten for 6 months he would do the biopsy but he was hap;py to say that I am not celiac. I said no way as it would kill me to do that. And that was it - dismissed!

As if anyone would "want" to have celiac disease. I feel he should be "dismissed".

I just wanted to know if all he said to me is correct?

Sounds to me like none of what he said to you was correct. Maybe God will look down and bless him with celiac disease just to school 'im!!

lovegrov Collaborator
lovegrov
Posted

My DH was not painful. Still, your doctor is an idiot.

richard

nora-n Rookie
nora-n
Posted

I am in Europe too, and your doctor is wrong wrong.

There are some new articles about celiac now saying many never reported any symptoms, that is because of family screening after the first celiac is diagnosed in a family.

But their symptoms (which they did not report before) got better off gluten. all kins of ills and illnesses, joint pain, depression, lots of things they did not connect to celiac before.

Thos articles are called the new face of celiac or new presentations og something like that. And that only 5% are underweight and 39% are overweight now.

On the local forum most have had symptoms and they do improve on a diet, but there are occasionally some who still have problems but they are few. And most have to do with wheat starch, that they do not improve until they also omit wheat starch.

If you can get a biopsy of the rash (healthy skin that has not had an outbreak, but during an outbreak) and it is positive for DH, this means you have celiac too. It can be positive for a year after going gluten-free.

Mine was negative but I had been gluten-free for a year and it was done without an outbreak.

(mine is burning a little bit right now as I ate a little bread with wheat starch while travelling)

bunnybaby Newbie
bunnybaby
Posted
  • Author
I am in Europe too, and your doctor is wrong wrong.

There are some new articles about celiac now saying many never reported any symptoms, that is because of family screening after the first celiac is diagnosed in a family.

But their symptoms (which they did not report before) got better off gluten. all kins of ills and illnesses, joint pain, depression, lots of things they did not connect to celiac before.

Thos articles are called the new face of celiac or new presentations og something like that. And that only 5% are underweight and 39% are overweight now.

On the local forum most have had symptoms and they do improve on a diet, but there are occasionally some who still have problems but they are few. And most have to do with wheat starch, that they do not improve until they also omit wheat starch.

If you can get a biopsy of the rash (healthy skin that has not had an outbreak, but during an outbreak) and it is positive for DH, this means you have celiac too. It can be positive for a year after going gluten-free.

Mine was negative but I had been gluten-free for a year and it was done without an outbreak.

(mine is burning a little bit right now as I ate a little bread with wheat starch while travelling)

Thank you, I will pursue it through the DH. I know it is caused by wheat, as it the link to outbreaks is so strong now.

I have been Gluten free for 7 months or 8 I think so that should be fine. I am just recovering from an outbreak now thanks to slipping up somewhere 2 weeks ago.

nora-n Rookie
nora-n
Posted

Maybe get a biopsy done during an outbreak. Must be done right (on skin that is healthy) (I read a posting somewhere that the doctor took several samples and the person did get a diagnosis)

I think some pwople need several biopsies before one turns out positive. Don't give up.

I still have to get a big rash and a biopsy ( my rash lasts only a short time)

Archived

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

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


  • Member Statistics

    • Total Members
      131,547
    • Most Online (within 30 mins)
      7,748
    gizmo1jazz2
    Newest Member
    gizmo1jazz2
    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.