Biopsy Shows gluten-free Diet Ineffective

[BUZ]

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?

[Ursa Major]

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]

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]

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]

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]

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]

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

[Fiddle-Faddle]

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]

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

[ravenwoodglass]

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]

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]

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

[BUZ]

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]

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.