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

I Think My GI Is An Idiot

DonnaMM

Recommended Posts

DonnaMM Explorer
DonnaMM
Posted

I posted awhile ago about what the visual findings were on EGD that I had done. Now this doctor had a lot of stuff in front of him, my TIBC was elevated which means I have a little bit of anemia, and my serum osmolality was elevated, I assume I was dehydrated due to my chronic diarrhea. After the procedure he said looks like celiac, but then the biopsy came back normal and he said its not celiac, even with bunted villi as well as mucosal atrophy and within 24 hours of eating gluten I am running to the bathroom. He tried to tell that the blunting 'is just there' and the atrophy is nothing so just eat what I want. My primary seemed to think I had celiac before I had the EGD because I was constantly going to see him for diarrhea/constipation/rectal bleeding, he told me to go on the diet and I did and it was like a miracle. Did anyone else have problems getting doctors to listen to their symptoms or did they just simply go by the clinical findings. I just don't know what to think? I have a history of other autoimmune conditions and I am danish so it's very common in my part of the world. He seems to think I just have an intolerance and thats why I have the blunting but everything I have read says gluten intolerance does not cause damage and celiac is what causes to blunting. Oh and I am not lactose or soy intolerant since I have had the testing done and the dairy or soy causes no GI upset.

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

Recovery while on the diet is considered diagnostic as well. I think you have your answers. Welcome to the club! :D

ravenwoodglass Mentor
ravenwoodglass
Posted

I think your primary is a lot smarter than your GI. It is not unusual for GI doctors to be clueless. Mine wouldn't even consider celiac since I am negative on blood tests until the challenge he demanded almost killed me with a severe GI bleed. Glad you got the answer to what was causing your problems and are healing.

Celtic Queen Explorer
Celtic Queen
Posted

It's not just you who has had that experience. My GI dropped me the minute my biopsies came back negative. He wouldn't even return my phone calls. Even though I told his nurse I was gluten free for 6 weeks before the procedure, not knowing it would mess up my test. I was so incredibly angry.

My Primary Care Doctor, on the other had is absolutely wonderful. She'll order any test I ask her to. She completely agrees with me that I have issues with gluten and encourages me to stay on the diet. She was furious when I told her about how the GI doctor treated me.

If the diet works for you, stay on it. Especially since you have other autoimmune disorders that could be aggravated by the gluten. I feel that we're the best advocates for our own health and a lot of times we know what's wrong with us better than the doctors do.

Reba32 Rookie
Reba32
Posted

I'd suggest that if there was actually visible blunting of the villi, but negative biopsy, that the GI took the biopsy from the wrong spot, and likely not enough biopsies. Which unfortunately seems to be common.

I'll go along with the others and say if there's visible blunting, and you feel better on a gluten-free diet, welcome to the club! Though it's not really a club any of us particularly like being a member of! :huh:

mommida Enthusiast
mommida
Posted

I think your old GI is an idiot too! :D

I've got a building up rant in my system about my daughter's ped gi from today's events. I'm on the verge of ripping a new orafice for the guy. I am scared that he has LOST his f-ing mind. Now I am totally freaked out that I have been trusting this Bozo for the care of my daughter since 2003. :ph34r:

AVR1962 Collaborator
AVR1962
Posted

I hope you are going to a gluten free diet, sounds like your body is need of repair! I do not know how some docs get their degree!

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

Celiac.com Sponsor (A8-M):


Skylark Collaborator
Skylark
Posted

GIs seem to want you with tons of antibodies and villi pretty much gone (Marsh 3 or 4) before they'll diagnose celiac. It's not helpful at all!

mommida Enthusiast
mommida
Posted

Apparently my daughter's GI is such a f-ing idiot he....get ready for this one.... declared my daughter not Celiac anymore.

Seriously!!!? Follow this, he scoped her after she has been on a gluten free diet since she was 17 months old (for EE) when she was about 7 years old and didn;t see any villi damage. So even though he is the one who diagnosed "probable" Celiac in the first place, he said she doesn't have Celiac now.

I'm pretty busy right now, trying to find another pediatric

Gastroenterologist.

Skylark Collaborator
Skylark
Posted

Welcome to medical school. Please check your brain at the door.

mommida Enthusiast
mommida
Posted

This was supposed to be the "best" doctor in the area.

He also "undiagnosed" her Eosinophilic Esophagitus at the same scope. (She wasn't eating gluten, gluten free oats, fish, shellfish, soy, casein, peanuts, peas, (beans in general), tree nuts, food dyes, and eggs. It was supposed to be a re-check to etermine if food "trigger" could be identified and avoided to control the EE.

So now with the scope last week, she is "diagnosed with EE". Like it the first time. A modified Flovent inhaler and a refferal to an allergist. She was tested when she first diagnosed with EE 3 years ago ~ she's not "allergic" to anything.

I feel like I've been punched in the gut. I trusted this psycho with the care of my daughter since she was 13 months old.

He told me to feed her gluten!!? Well I know I totally went off on him. I don't think I was cussing, but I might have been. I didn't choke him, but I seriously thought about it.

mushroom Proficient
mushroom
Posted

I would not have been able to contain myself with that idiot. :blink: He's a fix-it man. If your daughter has appendicitis and he takes it out, she doesn't have appendicitis - fixed!. If she has an infection, he gives her antibiotics and it goes away, she is not infected - fixed! Obviously your daughter does not have EE or celiac because the symptoms have gone away and, presto!!! they have been 'fixed' :lol: The fallacy of relying solely on test results..... without engaging brain :P

DonnaMM Explorer
DonnaMM
Posted
  • Author

I also don't know how you were able to handle that guy. It is no secret that celiac is autoimmune and you do not outgrow it is plastered all over the internet. Any 10 year old could figure it out. I am not too familiar with EE but what I have read it does seem like something to not take seriously or misdiagnosis. And your poor child, it sounds like see was nearly starving at a time where feeling involved is so important.

mommida Enthusiast
mommida
Posted

Ok The reason I really didn't kill him and get hauled off to jail.. My daughter was sitting right there.

I think she needs to e tested for some kind of metabolic disorder or blood disease. It is just another step to the proper diagnoses. Maybe I needed someone to take Celiac and Eosinophilic Esophagitus off the table to start looking for something else. But seriously, NO one should ever believe Celiac can be "fixed". (Especially you can't test someone for Celiac when they haven't been eating gluten.) Most Celiacs are not ending up in the hospital for dehydration on average of once a year. There is not an emerging pattern of a connection between Celiac and EE (at least not yet). Seriously what are the odds that this kid can get stuc with 2 wretched diseases?

It is time to get a new doctor on this. (and I don't believe a gastro. is the right specialist to be working with.)

DonnaMM Explorer
DonnaMM
Posted
  • Author

Ok The reason I really didn't kill him and get hauled off to jail.. My daughter was sitting right there.

I think she needs to e tested for some kind of metabolic disorder or blood disease. It is just another step to the proper diagnoses. Maybe I needed someone to take Celiac and Eosinophilic Esophagitus off the table to start looking for something else. But seriously, NO one should ever believe Celiac can be "fixed". (Especially you can't test someone for Celiac when they haven't been eating gluten.) Most Celiacs are not ending up in the hospital for dehydration on average of once a year. There is not an emerging pattern of a connection between Celiac and EE (at least not yet). Seriously what are the odds that this kid can get stuc with 2 wretched diseases?

It is time to get a new doctor on this. (and I don't believe a gastro. is the right specialist to be working with.)

Although I am a big believer in specialists in for certain things. I am starting to learn GI doctors dont seem to be the best guys to deal with celiac disease. I am not sure where you live but I would recommend possibly a university hospital. They are very big into research and are constantly re-evaulating causes and presentations of certain diseases. Maybe they could take a good look at your daughter and help figure it out. She is young and its important she get healthy now when her body is growing the most, but I am sure you know that

Robert M. Newbie
Robert M.
Posted

I posted awhile ago about what the visual findings were on EGD that I had done. Now this doctor had a lot of stuff in front of him, my TIBC was elevated which means I have a little bit of anemia, and my serum osmolality was elevated, I assume I was dehydrated due to my chronic diarrhea. After the procedure he said looks like celiac, but then the biopsy came back normal and he said its not celiac, even with bunted villi as well as mucosal atrophy and within 24 hours of eating gluten I am running to the bathroom. He tried to tell that the blunting 'is just there' and the atrophy is nothing so just eat what I want. My primary seemed to think I had celiac before I had the EGD because I was constantly going to see him for diarrhea/constipation/rectal bleeding, he told me to go on the diet and I did and it was like a miracle. Did anyone else have problems getting doctors to listen to their symptoms or did they just simply go by the clinical findings. I just don't know what to think? I have a history of other autoimmune conditions and I am danish so it's very common in my part of the world. He seems to think I just have an intolerance and thats why I have the blunting but everything I have read says gluten intolerance does not cause damage and celiac is what causes to blunting. Oh and I am not lactose or soy intolerant since I have had the testing done and the dairy or soy causes no GI upset.

My number one rule is...listen to your body. What works for one may not for another. I dropped gluten and haven't felt this good in a long time. Any good physician must consider clinical results as much as lab results. Who cares if someone calls it this or that, the bottom line is, gluten, especially today's version is a toxic foreign substance that your body feels is harmful enough to try to kill. I interpret my body's reaction to this nasty invader as a positive, it tells me my immune system is being highly protective and performing as nature intended it.

adab8ca Enthusiast
adab8ca
Posted

I had TOTAL VILLOUS ATROPHY and screaming antibodies but very few GI symptoms (although a whole lot that made me think cancer, ALS, MS etc...). GI Dr. basically said "yeaaaaaaaaaaaaaahhhhh, it's celiac. Nothing I can do. Stop eating gluten. See ya"...No further testing, no followup. My GP was MUCH better!

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to Clear2me's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Gluten free nuts

      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to...
    2. trents
      - trents replied to Larzipan's topic in Related Issues & Disorders
      42

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies...
    3. Scott Adams
      - Scott Adams replied to Larzipan's topic in Related Issues & Disorders
      42

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted...
    4. Wheatwacked
      - Wheatwacked commented on Scott Adams's article in Latest Research
      6

      Study Estimates the Costs of Delayed Celiac Disease Diagnosis (+Video)

      Have you had your 25(OH)D vitamin D blood level checked? Vitamin D deficiency occurs in 40 - 60% of western societies. It is even more common in Celiac Disease because of malabsorption syndrome. Appropriate intake of vitamin D or skin production from sun, increases the absorbtion rate of Calcium.and phosphorus, two minerals crucial to...
    5. Wheatwacked
      - Wheatwacked replied to Larzipan's topic in Related Issues & Disorders
      42

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Some backup to my statement about gluten and milk. Some background. When my son was born in 1976 he was colicky from the beginning. When he transitioned to formula it got really bad. That's when we found the only pediactric gastroenterologist (in a population of 6 million that dealt with Celiac Disease (and he only had 14 patients with celiac disease...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,387
    • Most Online (within 30 mins)
      7,748
    LizzieE
    Newest Member
    LizzieE
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Gluten free nuts

      By Aretaeus Cappadocia · Posted

      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to see if they can get you the gluten-free version (they are tasty) > This past week I bought "Sliced Raw Almonds, Baking Nuts, 5 lbs Item 1495072 Best if used by Jun-10-26 W-261-6-L1A 12:47" at Costco. The package has the standard warning that it was made on machinery that <may> have processed wheat. Based on that alone, I would not eat these. However, I contacted customer service and asked them "are Costco's Sliced Almonds gluten free?" Within a day I got this response:  "This is [xyz] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response:  This item does not have a risk of cross contamination with gluten, barley or rye." Based on this, I will eat them. Based on experience, I believe they will be fine. Sometimes, for other products, the answer has been "they really do have cross-contamination risk" (eg, Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs Item 1195303). When they give me that answer I return them for cash. You might reasonably ask, "Why would Costco use that label if they actually are safe?" I can't speak for Costco but I've worked in Corporate America and I've seen this kind of thing first hand and up close. (1) This kind of regulatory label represents risk/cost to the company. What if they are mistaken? In one direction, the cost is loss of maybe 1% of sales (if celiacs don't buy when they would have). In the other direction, the risk is reputational damage and open-ended litigation (bad reviews and celiacs suing them). Expect them to play it safe. (2) There is a team tasked with getting each product out to market quickly and cheaply, and there is also a committee tasked with reviewing the packaging before it is released. If the team chooses the simplest, safest, pre-approved label, this becomes a quick check box. On the other hand, if they choose something else, it has to be carefully scrutinized through a long process. It's more efficient for the team to say there <could> be risk. (3) There is probably some plug and play in production. Some lots of the very same product could be made in a safe facility while others are made in an unsafe facility. Uniform packaging (saying there is risk) for all packages regardless of gluten risk is easier, cheaper, and safer (for Costco). Everything I wrote here is about my Costco experience, but the principles will be true at other vendors, particularly if they have extensive quality control infrastructure. The first hurdle of gluten-free diet is to remove/replace all the labeled gluten ingredients. The second, more difficult hurdle is to remove/replace all the hidden gluten. Each of us have to assess gray zones and make judgement calls knowing there is a penalty for being wrong. One penalty would be getting glutened but the other penalty could be eating an unnecessarily boring or malnourishing diet.
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies also indicate the amount of gliadin in human breast milk is miniscule and unlikely to cause reactions:  https://www.glutenfreewatchdog.org/news/gluten-peptides-in-human-breast-milk-implications-for-cows-milk/ I would also point out that Dr. Peter Osborne's doctorate is in chiropractic medicine, though he also has studied and, I believe, holds some sort of certifications in nutritional science. To put it plainly, he is considered by many qualified medical and nutritional professionals to be on the fringe of quackery. But he has a dedicated and rabid following, nonetheless.
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted, still intact and immunogenic, into the milk. The cow's digestive system is designed to break down proteins, not transfer them whole into milk. This is not a recognized pathway in veterinary science. The provided backup shifts from cow's milk to human breastmilk, which is a classic bait-and-switch. While the transfer of food proteins in human breastmilk is a valid area of study, it doesn't validate the initial claim about commercial dairy. The use of a Dr. Osborne video is a major red flag. His entire platform is based on the idea that all grains are toxic, a view that far exceeds the established science on Celiac Disease and non-celiac gluten sensitivity. Extraordinary claims require extraordinary evidence, and a YouTube video from a known ideological source is not that evidence."  
    • Wheatwacked
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Wheatwacked · Posted

      Some backup to my statement about gluten and milk. Some background.  When my son was born in 1976 he was colicky from the beginning.  When he transitioned to formula it got really bad.  That's when we found the only pediactric gastroenterologist (in a population of 6 million that dealt with Celiac Disease (and he only had 14 patients with celiac disease), who dianosed by biopsy and started him on Nutramegen.  Recovery was quick. The portion of gluten that passes through to breastmilk is called gliadin. It is the component of gluten that causes celiac disease or gluten intolerance. What are the Effects of Gluten in Breastmilk? Gliaden, a component of gluten which is typically responsible for the intestinal reaction of gluten, DOES pass through breast milk.  This is because gliaden (as one of many food proteins) passes through the lining of your small intestine into your blood. Can gluten transmit through breast milk?  
    • trents
      Shingles - Could It Be Related to Gluten/ Celiac

      By trents · Posted

      I don't know of a connection. Lots of people who don't have celiac disease/gluten issues get shingles.
×
×
  • 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.