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

Biopsy Shows gluten-free Diet Ineffective

BUZ

Recommended Posts

BUZ Newbie
BUZ
Posted

Diagnosed Celiac Feb '07. Have followed completely gluten-free diet since (14 months).

Endoscopy this week. Biopsy reveals untreated Celiac disease.

Totally surprised. Any similar experiences?

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

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted

Are you feeling better eating a gluten-free diet? Are you still having dairy and/or soy products? Those can also damage the villi.

Damaged villi can also be caused by systemic candida infection, parasites and other problems. Celiac disease is not the only cause of damaged villi.

That said, you may have refractory sprue, meaning that your villi are damaged beyond repair, and you never get better. I hope that is not the case for you.

rinne Apprentice
rinne
Posted

I am wondering if you may be exposed to gluten without knowing it, where do you work, could it be your shampoo, toothpaste, etc., how old are you? The later we are diagnosed the more difficult it is to heal. What is your current diet?

And welcome. :)

BUZ Newbie
BUZ
Posted
  • Author
Are you feeling better eating a gluten-free diet? Are you still having dairy and/or soy products? Those can also damage the villi.

Damaged villi can also be caused by systemic candida infection, parasites and other problems. Celiac disease is not the only cause of damaged villi.

That said, you may have refractory sprue, meaning that your villi are damaged beyond repair, and you never get better. I hope that is not the case for you.

BUZ Newbie
BUZ
Posted
  • Author
Are you feeling better eating a gluten-free diet? Are you still having dairy and/or soy products? Those can also damage the villi.

Damaged villi can also be caused by systemic candida infection, parasites and other problems. Celiac disease is not the only cause of damaged villi.

That said, you may have refractory sprue, meaning that your villi are damaged beyond repair, and you never get better. I hope that is not the case for you.

Yes felling better. Less bloating and gained some weight back. Lactose free milk but regular ice cream and cheese. Many thanke for suggestions

BUZ Newbie
BUZ
Posted
  • Author
I am wondering if you may be exposed to gluten without knowing it, where do you work, could it be your shampoo, toothpaste, etc., how old are you? The later we are diagnosed the more difficult it is to heal. What is your current diet?

And welcome. :)

Thanks. My GI doc also thinks I may be getting gluten from an unknown source. Never thought about shampoo but I am over 65 and still use it (attempted humor). I am on a strict gluten-free diet, but drink Lactose free milk. I do occasionally eat ice cream and often eat yogurt for lunch. I have been a milk guzzler all of my life.

cruelshoes Enthusiast
cruelshoes
Posted

Did they do repeat bloodwork? Can you compare your bloodwork results at your diagnosis to current?

Open Original Shared Link

Follow Up Test #1:

tTG-IgA: This test result should be negative

The numerical value of the test doesn

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

Celiac.com Sponsor (A8-M):


Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Casein intolerance can cause villi damage. Casein is the protein in milk and milk products, and lactose-free milk, alas, DOES contain casein. It is very common for celiacs to be casein intolerant. :(

Also, many ice creams contain wheat starch, especially "lite" versions. They use the wheat starch as a lowfat thickener. It took me several months to figure that one out!

There are many other "hidden" sources of gluten. Soy sauce is another--if you eat Chinese food, you are almost certainly getting a lot of gluten unless you make it yourself with gluten-free soy sauce.

tarnalberry Community Regular
tarnalberry
Posted

yup, while it's not documented to be as common, casein-induced enteropathy is possible.

ravenwoodglass Mentor
ravenwoodglass
Posted

Also make sure you check every med and supplement you are on. There are no regs to putting the toxin into those items and you need to check with the maker of the drugs, don't trust your pharmacist or doctor to know for sure. Some pharms will be good about checking and others get frustrated and assume things are okay. With generic scripts you really need to check each time the script is filled as they can change binders at will.

I also fully agree with dropping the dairy for a bit, it can interfere with the healing process if you are sensitive to it. And if you can go with whole, unprocessed foods for a bit, and avoid restaurants till you heal that may help also.

gfp Enthusiast
gfp
Posted
Thanks. My GI doc also thinks I may be getting gluten from an unknown source. Never thought about shampoo but I am over 65 and still use it (attempted humor). I am on a strict gluten-free diet, but drink Lactose free milk. I do occasionally eat ice cream and often eat yogurt for lunch. I have been a milk guzzler all of my life.

Both this and milk are likely culprits. Being 65 your Villi will take longer to heal. Your about the same age as my mom and she also had lots of problems getting her villi to heal but she also continued with milk and soya and she was also getting CC from her dog.

Its a catch-22 like situation, with damaged villi its difficult to get the nutrition to heal ...

If you get CC it can be a 3 steps forwards and 2 back situation.. or if you get too much it ends up being 2 forwards and 3 back...

happygirl Collaborator
happygirl
Posted

As mentioned, refractory sprue is a possibility. You may need a referral to a Celiac specialist if this is the case.

BUZ Newbie
BUZ
Posted
  • Author
Casein intolerance can cause villi damage. Casein is the protein in milk and milk products, and lactose-free milk, alas, DOES contain casein. It is very common for celiacs to be casein intolerant. :(

Also, many ice creams contain wheat starch, especially "lite" versions. They use the wheat starch as a lowfat thickener. It took me several months to figure that one out!

There are many other "hidden" sources of gluten. Soy sauce is another--if you eat Chinese food, you are almost certainly getting a lot of gluten unless you make it yourself with gluten-free soy sauce.

Thanks for the advice.

I'll make some changes in diet immediately and check into my tolerance for casein.

All dairy products were eliminated about a week ago just on a hunch that it could be causing problems.

bareden Newbie
bareden
Posted

The older you are the longer it takes for you to heal. I am told it can take two years or more. Yes, and like the others said- don't forget to check your meds, toothpaste, chapstick ect.

Archived

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

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


  • Member Statistics

    • Total Members
      131,899
    • Most Online (within 30 mins)
      7,748
    dcarter1682
    Newest Member
    dcarter1682
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.