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

Gastro Said I Dont Have Celiac Disease, I'm Crying, Please Help :'(

Miss-Marie

Recommended Posts

Miss-Marie Rookie
Miss-Marie
Posted

Hi everyone, I just had my gastroenteroligist appointment today and left the room crying, I felt like the doctor just didnt listen to me or take me seriously at all, he made me feel so small. he started off by saying that he has good news, that I dont have celiac disease because my biopsys came back normal, but when I asked him why my blood tests were positive, especially the endomysial antibody one, he said that there are always mistakes in science and that those results were wrong, and he even said that no-one uses the endomysial antibody test anymore because thats an old one, I've never heard that before :/ also he called celiac disease an 'allergy'. I told him I've been on the gluten free diet for 3 and a half months now and some of my symptoms are improving, and he said maybe I'm gluten intolerant. I felt like he was speaking to me rudely, because he kept saying we are going around in circles here, these are the results and thats that. and that he doesnt know what i want from him and I could tell he was getting annoyed, I even said to him that I'm sorry for asking so many questions but he just sighed. 

he now wants to test me for inflammatory bowel or something and has given me a fecal sample container to use.. I'm so unhappy all I wanted was a diagnoses but he just made me feel stupid for being there. he also said that Ive gained weight from the first appointment but that wasnt true at all because I have lost almost a stone since going gluten free, he couldnt even find my blood tests results on his papers so he had to look it up online, and he was trying to rush me out of the room. 

I've never felt so humiliated and depressed in my life, I feel the lowest I've felt in a long long time, please can someone give me any advice or just anything because I truly feel like giving up :( Thank you x 

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Get a copy of all your blood work, the Procedure report and the pathology report. Read them. See if he even took any samples ( biopsies). He should take at least 4-6 of the small intestine. Get all those things and we can help you understand them. Do the test he wants and get that results in writing, too.

Miss-Marie Rookie
Miss-Marie
Posted
  • Author

Hi karen, thanks for the reply. I have copies of my blood testing and the endoscopy report etc, and the endomysial antibody test was weakly positive, and the ttg iga test was a 3. which he says was 'borderline', but im not sure what that word means, the person who did the endoscopy took 5 biopsys in total, and while I was having the procedure, I was pulling the tube out alot so the lady said she couldnt get a clear view in there :( x

kareng Grand Master
kareng
Posted

Hi karen, thanks for the reply. I have copies of my blood testing and the endoscopy report etc, and the endomysial antibody test was weakly positive, and the ttg iga test was a 3. which he says was 'borderline', but im not sure what that word means, the person who did the endoscopy took 5 biopsys in total, and while I was having the procedure, I was pulling the tube out alot so the lady said she couldnt get a clear view in there :( x

So what exactly are the blood tests, results and ranges? What does the pathology report say? Does it say 5 biopsies? Are they all of the intestine? None of the stomach? What are the pathologists findings?

I just want you to understand and be able to make informed decisions and ask good questions of the doc

Miss-Marie Rookie
Miss-Marie
Posted
  • Author

I didnt get the ranges of the blood tests, just got a copy that said I had a ttg blood test which was 3 (borderline), and endomysial is weakly positive, sorry I'm not very helpful :( I was told there was 5 biopsies that were taken but have no idea which parts they were taken from. I will post here what the endoscopy form said: thank you

 

HISTOLOGY-V5

HISTOLOGY REPORT

HISTOPATHOLOGY REPORT

CLINICAL DETAILS

?coeliac disease.

SPECIMEN

Small bowel biopsy, D2

MACROSCOPY

Multiple biopsies measuring 0.5mm to 2mm. 

MICROSCOPY

Sections show small bowel mucosa with a normal villious/crypt architecture.

There is no significant increase of acute inflammatory cells in the lamina propria and increase in intraepithelial lymphocytes is not seen. Parasites have not been identified. 

There is no morphological evidence of coeliac disease in these biopsies. 

CONCLUSION

Duodenal biopsy: within normal histological limits.

End of report.

kareng Grand Master
kareng
Posted

Love the exact number " multiple". You could be non celiac gluten intolerant. If the gluten-free diet makes you feel better, you can continue it but also continue looking for other issues.

Miss-Marie Rookie
Miss-Marie
Posted
  • Author

Thanks karen, I guess I could be gluten intolerant but the main thing that makes me think its celiac is the endomysial test, is there any way that I can still get a diagnoses now? ive heard of people getting a second opinion but i dont know how to go about that, and this appointment took over 4 months of waiting for it :( i dont know why its so difficult to get a diagnoses, its really bothering me, do you think there would be any doctors who specialise in celiac disease in england? because I really feel like my case needs to be looked into, and also I need to be diagnosed because gluten free food is so expensive, so if I could get a prescription for that it would help so much. I feel like I need a miracle lol. x

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

I am at the Intl Celiac Symposium. All the docs are using tTG. A doc just asked about why they aren't talking about EMA. They said that it isn't as specific and that you can get a slight positive one day and it is negative the next. I have no references but that gels with what your doc said.

Miss-Marie Rookie
Miss-Marie
Posted
  • Author

Is that a conference or something I'm not too sure what that means, thats interesting about the slight positive then negative the next day, I thought the endomysial antibody blood test was the best one out there, and that it was more specific than the others, i guess they are doing more research and seeing that its not that good? hmm 

SkyBlue4 Apprentice
SkyBlue4
Posted

You said you were gluten free for 3.5 months....were you on gluten when you had the endoscopy?

 

Miss-Marie Rookie
Miss-Marie
Posted
  • Author

Hi Skyblue, thanks for the post, yes I was eating gluten when I had the endoscopy and didnt start my gluten free diet till I'd had all my testing done. 

powerofpositivethinking Community Regular
powerofpositivethinking
Posted

grrr i'm so sorry he made you feel this way  :(  Some doctors don't have people skills, and don't realize that the brief time they spend with a patient can have such a negative or positive impact.  I would get the additional test, but if he continues to treat you that way, pack your bags and find a new doc.  

 

the Maya Angelou quote always comes to mind in situations like this. "I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel."

 

I hope you're feeling better!

 

 

Hi everyone, I just had my gastroenteroligist appointment today and left the room crying, I felt like the doctor just didnt listen to me or take me seriously at all, he made me feel so small. he started off by saying that he has good news, that I dont have celiac disease because my biopsys came back normal, but when I asked him why my blood tests were positive, especially the endomysial antibody one, he said that there are always mistakes in science and that those results were wrong, and he even said that no-one uses the endomysial antibody test anymore because thats an old one, I've never heard that before :/ also he called celiac disease an 'allergy'. I told him I've been on the gluten free diet for 3 and a half months now and some of my symptoms are improving, and he said maybe I'm gluten intolerant. I felt like he was speaking to me rudely, because he kept saying we are going around in circles here, these are the results and thats that. and that he doesnt know what i want from him and I could tell he was getting annoyed, I even said to him that I'm sorry for asking so many questions but he just sighed. 

he now wants to test me for inflammatory bowel or something and has given me a fecal sample container to use.. I'm so unhappy all I wanted was a diagnoses but he just made me feel stupid for being there. he also said that Ive gained weight from the first appointment but that wasnt true at all because I have lost almost a stone since going gluten free, he couldnt even find my blood tests results on his papers so he had to look it up online, and he was trying to rush me out of the room. 

I've never felt so humiliated and depressed in my life, I feel the lowest I've felt in a long long time, please can someone give me any advice or just anything because I truly feel like giving up :( Thank you x 

 

kareng, how about the one test I am continually hung up on...DGP?  Anything said specifically about that?  

 

 

I am at the Intl Celiac Symposium. All the docs are using tTG. A doc just asked about why they aren't talking about EMA. They said that it isn't as specific and that you can get a slight positive one day and it is negative the next. I have no references but that gels with what your doc said.

Kassia Newbie
Kassia
Posted

Hi Skyblue, thanks for the post, yes I was eating gluten when I had the endoscopy and didnt start my gluten free diet till I'd had all my testing done. 

 

From your doctor's perspective, not having celiac *is* good news. From your perspective, it's bad news. But based on your initial post, you are much improved on a gluten-free diet. If you take a step back, you'll realize your doctor -- who may not have the best bedside manner -- is telling you that while you may not have celiac disease, you may have non-celiac gluten intolerance. Also, while endoscopy biopsies are useful, they can only reach so far into the small intestine.

 

I think focusing on your health is far more important than getting a diagnosis of celiac. IBS, his next suggestion, is indicative of a problem; you still have to get to the root cause (I have a friend who was "diagnosed" with IBS, turns out she actually had Addison's disease). If eliminating gluten helps, that is fantastic. If you are still working through issues, focus on those. But please don't focus on getting the diagnosis you want because the bigger issue is getting well!

Miss-Marie Rookie
Miss-Marie
Posted
  • Author

Powerofpositivethinking - thank you, that's very true some doctors just don't know how to speak to people, I was waiting over 4 months for that appointment and got my hopes up about having a diagnoses I guess that's why I was so upset, I just wish I could have a confirmed and like proper diagnoses because its hard also when people ask me why I'm eating different food from them, like at family parties, and I have to explain that I 'think' I have celiac disease and not been confirmed lol, but I know that I definitely have a gluten problem so that alone will make me continue to eat gluten free, also the gluten free food is so expensive so its hard :( I'm going to do the test he wants me to do just so I will know if I have that inflammatory bowel condition but I know I don't anyway. x

 

Kassia - Yes I can see know when I think about it, but yesterday I just had got my hopes up about it, Ohh I have a question, does non celiac gluten intolerance cause the blood tests to be positive sometimes? and I was actually told I had IBS before the doctor thought of testing me for celiac disease lol, and then with the positive result, my doctor told me that I did have celiac disease and thats why I was so sure of it, but gluten intolerance seems to be the best I can get for a diagnoses. Thank you x 

Archived

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

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


  • Member Statistics

    • Total Members
      131,545
    • Most Online (within 30 mins)
      7,748
    Jem68
    Newest Member
    Jem68
    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

    • 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.
    • Jsingh
      Protein or fat?

      By Jsingh · Posted

      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      High Cost of Gluten-Free Foods

      By Chanda Richard · Posted

      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Frequent nausea after gluten-free diet

      By petitojou · Posted

      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • 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.