Jump to content
  • 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):

What Do You Do?


SillyYakMom

Recommended Posts

SillyYakMom Rookie

If there is a friend who comes to you with every symptom in the book, her children have the symptoms, her dad has had intestinal cancer, brother has lymphoma, cousins have Chrone's, was told she has IBS, etc. etc. and finally goes to the doctor to get her children looked at for it and you swear they got it wrong?? Everything she has told me sounds CLASSIC. She went to the same hospital my relatives went to who had possitive biopsys and whos gastroenterologist told them to go off of dairy INSTEAD of gluten??? :blink: She had her kids get the blood test and the doctor said "Everything looks fine so we won't do a biopsy." The blood test isn't fool poof, the biopsy is and from everything I have heard from that hospital they don't know what they are doing or looking for. So they said her problems and her kids problems are just cronic constipation. When people come to me complaining of things and asking questions I tell them what they can do to see if it is celiac disease and then they go to these terrible doctors who tell them to cut out dairy? It's sad to me, because her family has all these problems and after all I have heard it sounds just like it and if she only had someone tell her what it REALLY is she would do it. And if she only knew how much better life is without eating what is like pioson to a celiac she would empty her whole pantry. But maybe you guys know what it is like where it was amazing that you got someone to listen to you enough to persue medical help and it didn't turn out. This I guess is more of a vent, but wanted to know what you would do.


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



Celiac.com Sponsor (A8-M):



CarrieinIowa Newbie
If there is a friend who comes to you with every symptom in the book, her children have the symptoms, her dad has had intestinal cancer, brother has lymphoma, cousins have Chrone's, was told she has IBS, etc. etc. and finally goes to the doctor to get her children looked at for it and you swear they got it wrong?? Everything she has told me sounds CLASSIC. She went to the same hospital my relatives went to who had possitive biopsys and whos gastroenterologist told them to go off of dairy INSTEAD of gluten??? :blink: She had her kids get the blood test and the doctor said "Everything looks fine so we won't do a biopsy." The blood test isn't fool poof, the biopsy is and from everything I have heard from that hospital they don't know what they are doing or looking for. So they said her problems and her kids problems are just cronic constipation. When people come to me complaining of things and asking questions I tell them what they can do to see if it is celiac disease and then they go to these terrible doctors who tell them to cut out dairy? It's sad to me, because her family has all these problems and after all I have heard it sounds just like it and if she only had someone tell her what it REALLY is she would do it. And if she only knew how much better life is without eating what is like pioson to a celiac she would empty her whole pantry. But maybe you guys know what it is like where it was amazing that you got someone to listen to you enough to persue medical help and it didn't turn out. This I guess is more of a vent, but wanted to know what you would do.

<{POST_SNAPBACK}>

I can understand what you are feeling frustrated about. My whole family has a problem with gluten but none of us have tested positive in bloodwork. I am the only one to have a biopsy so far and it came back normal---though, honestly, I haven't trusted the way my tests were run. We all feel better gluten free and that is the best test. Unfortunately, doctors don't tell their patients that the tests they are administering may not be fool proof. Neither a biopsy or bloodwork means that someone does not have celiac or a gluten sensitivity---it can only rule it in.

You need to encourage your friend to research this more and if they have already been tested it won't hurt for them to try being gluten free---if they feel better then that is proof enough. Though I don't know if it always clears up quickly for people on the diet--they may need to give it a few months and of course, there can be other issues as well. I'd recommend the book Dangerous Grains and the ever-controversial Enterolabs website for more information for your friend.

Carrie

Iowa

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,075
    • Most Online (within 30 mins)
      10,442

    Nan7472
    Newest Member
    Nan7472
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
    • Aretaeus Cappadocia
      You have an odd story there. To me, the mechanical trigger suggests a mechanical problem and lower leg pain is a classic sciatica symptom. The fact that the clear mechanical linkage is no longer there does not take away from the fact that it was - maybe something shifted and the simple alignment is no longer there. There's also a good chance I am wrong and it's something else entirely. @Scott Adams's mention of shingles is interesting. It seems possible but unlikely to me, but who knows. However, I am writing here to reinforce the idea of getting the shingles vaccine. Ask anyone who has ever had shingles and they will bend your ear telling you how bad it is. I watched my wife go through it and it scared the bejeebers out of me. Even if you had the chicken pox vaccine, you really want to get the shingles vaccine.
    • HectorConvector
      Oddly this effect has gone now, just happened yesterday evening, the nerve pain is now back to its usual "unpredictable" random self again - but that was the only time I ever had some mechanical trigger for it, don't know why! There's no (or wasn't) actual pain in my neck - it was inside the leg, but when I looked down, now though, the leg pain just comes and goes randomly as before again.
×
×
  • Create New...