trents

I'll ask the same question that knitty kitty asked? On what basis did your Dr arrive at the conclusion that you have gluten intolerance?

But let's be clear about terminology because the terms "gluten intolerance" and "gluten sensitivity" are typically used interchangeably out there in the wild and both are used indiscriminately to speak of two different medical problems connected with gluten.

As I said, there are two medical conditions associated with these terms. The proper term for one is "celiac disease". For a person with celiac disease, gluten consumption causes an autoimmune reaction in the lining of the small intestine that creates inflammation and, over time, damages the lining. 

The proper term for the other medical condition condition connected to gluten ingestion is Non Celiac Gluten Sensitivity or NCGS. It shares many of the same symptoms with celiac disease, is 10x more common than celiac disease, but does not cause damage to the lining of the small intestine.

There are specific blood tests that have been developed to detect celiac disease. The inflammation it causes produces "antibodies" that can be detected in the blood with these tests. Another diagnostic measure when celiac disease is suspected involves a biopsy of the small bowel lining to check for damage.

Since NCGS does not produce inflammation of the small bowel lining and, therefore, no antibodies, there are no tests for NCGS. Celiac disease must first be ruled out to arrive at a formal diagnosis of celiac disease.

Now, I am assuming, since you say you have no symptoms other than migraines, your doctor is implying he things you have NCGS when he uses the term "gluten intolerance". 

How long have you been suffering from migraines? If they are of recent onset it is still possible you could be in the early stages of celiac disease with other symptoms to follow if you were to continue to consume normal amounts of gluten. But it sounds like you are attempting to eliminate gluten but having mixed success.

What medicine did they give you for migraines? Does it help much? I also suffer from migraines and am on one med for prevention and another for relief after onset. Many times, my headaches start during the night when I'm sleeping but not always.

Have you cut back on gluten consumption of late? As knitty kitty explained, you must have been eating generous amounts of gluten for at least a period of weeks for celiac testing to be valid. Many make the mistake of seeking testing and diagnosis after already experimenting with the gluten free diet.

One thing to realize is that reactions to foods don't necessarily happen immediately after eating. There can be a delay of 24 hr. So, when you say you don't get the migraine after eating gluten that may not be true.

Go to the main web site home page: celiac.com. You can type "celiac.com" into the internet browser address window and hit enter. That will take you to the web site home page. Then click on the "Forums" tab (I have circled it for you in the attached pic). Scroll down the page and choose a topic appropriate for your issue and click on it. You can create a new topic post in that section. I think when you get there it will be obvious how to do it.

Is there a particular reason you created a blog for this topic rather than posting your question in one of the regular forum topic sections where it will get more eyes?

On 6/20/2024 at 2:24 PM, alltheceliacquestions said:

I have always read that the level to be certified gluten free is 20ppm. Could you share where you found the 10ppm level?

"Gluten Free" is an FDA standard that requires less than 20ppm of gluten. "Certified Gluten Free" is a GFCO standard that requires less than 10ppm gluten. GFCO is a third party internationally recognized certifying body.

Kikkoman does offer some gluten free soy sauce products. We use them a home.

Welcome to the forum, Eldene!

IBS and other bowel diseases are more common in the celiac population than in the population at large. It is also true that many of us celiacs were misdiagnosed with some other bowel disease when it as actually celiac disease all along. Many primary care physicians are sorely lacking in knowledge about gluten disorders.

Did you mean to to create a blog entry? Your posts will get more exposure if you use the forum section of the Celiac.com rather than create a blog.  Scroll all the way to the top of this page and you will see a slate blue band. The forum section is at the far left of that band. Click on it and it will take you to the forum topic page. Then scroll through that page and find an appropriate topic for your post.

It can get so bad that many people can't stick it out. It would have been better to post in a relevant section of the forum rather than create a blog entry. You will get more exposure to your question in the general forum.

Well, I don't have colitis and the gluten free diet works well for me for the celiac disease. I've adjusted to the change in diet over the years and it's the new norm for me. I'm not an extremely sensitive celiac so I don't obsess over cross contamination. I do take reasonable precautions when eating out, ask questions of eatery staff, let them know my needs, etc. and that seems to suffice for me.

"Not much to report. My GI issues have all cleared up, but that's probably because I've gone gluten-free for the month of June. My entry wound has almost entirely healed. Aside from a touch of redness it should be 100% in a couple of days. That steroid cream made a huge difference, not in pain or discomfort really but certainly in aesthetics. Previously the entry wound was ugly enough to scare children."

It would scare me and I'm a senior citizen. Sounds like a great opportunity for some antibiotic resistant strain of bacteria to get a foothold someday.

1 hour ago, dixonpete said:

A better response would have been, a diabetic using insulin is still a diabetic, but what sense would it be to withhold insulin?

Hookworms are my insulin.

Yes, and diabetics also work at changing how they eat.

44 minutes ago, dixonpete said:

 I like the freedom of choice and freedom from fear of not being celiac.

You are a celiac and will always be a celiac. You are just masking it. If you were not a celiac then there would be no need for either going gluten free or using helminth therapy.

Gluten test? Do you get checked for celiac antibodies? You may know this but you need to be eating regular amounts of gluten (two slices of wheat bread daily or the wheat equivalent, according to the Mayo Clinic) or 6-8 weeks before being tested in order to not undermine the test results.

Yes, I was taking ropinerole while suffering from RLS. When I quit taking the statin the RLS disappeared and there was no more need for the ropinerole. I researched it and did find a connection between RLS and taking statins but it is not a common side effect of statins which are anti-cholesterol medications. 

Are you taking a statin by any chance? I suffered from RLS that quit as soon as I quit my statin drug.

42 minutes ago, Maddie6332 said:

So, why do some Celiacs have Gluten Free dogs and others do not, not including the cost. Do some Celiacs not need the Gluten Free dogs or is it something else? We are NOT talking about the cost.

I'm guessing the gluten sniffing dogs are only used when someone gets so sick from eating only tiny amounts of gluten by accident or cross contamination that they might die. Personally, I don't know of any celiacs who have gluten sniffing dogs and I know a lot of celiacs.

50 minutes ago, Maddie6332 said:

Okay! What level are you?

And how would I be able to figure out my level in my medical chart, because I am an 11 year old.

Maybe your mom and dad could go online and do that for you.

I don't know what Marsh level I was when they did the biopsy 20 years ago. Recently, I went to that doctor's office to get my medical records but that information was not recorded when they did the biopsy. Not sure they were using Marsh back then.

7 minutes ago, Maddie6332 said:

Can you figure out your Marsh level from looking at your symptoms or no?

No you can not.

And, I got a biopsy when I was little, would that figure out my Marsh level or no?

It could, yes. If they recorded the information in your medical chart it would be there.

 

They don't use a blood test to assess the damage done (Marsh scale) to the villi that line the small bowel. They use an endoscope. They first may sedate you so you don't fight the scope as in the sensation of choking and then pass the scope into your mouth, down your throat, past the esophagus, through the stomach and into the first part of the intestine known as the small bowel (duodenum). The scope is a long tube with a camera on the end of it and also a small pinching tool that can grab samples of the small bowel lining. The samples are sent to a lab to be looked at under a microscope to look for damage and to give it a grade. https://www.massgeneral.org/children/celiac-disease/endoscopy-biopsy-for-celiac-disease-what-to-expect#:~:text=During the Procedure&text=They will guide the endoscope,to check under a microscope.

2 hours ago, Maddie6332 said:

You know, Celiacs have to look out for each other no matter what. I am a celiac and I have been seeing on google that everyone has a level of celiac that is 1-4. How do you figure out your level online?And I would love to know what level all the Celiacs are here!🤔🤔🤔

Maddie, I believe you are referring what is known as the Marsh scale. It rates the damage done by celiac disease to the villi that line the small bowel. They take samples from the lining of the small bowel with a scoping tool and then send it to a lab for viewing under a microscope. The amount of damage to the villi is given a rating of 1-4.

I see no reason not to start the iron supplement as long as you can tolerate it. They tend to be hard on the gut so choose one that is buffered/slow release. Also, drink some acidic beverage with it like orange juice or tomato juice to aid assimilation. And make sure the supplement itself is gluten free. Wheat starch is used as a filler in some pills/suppelments.

36 minutes ago, Jackie Garrett said:

Sorry I don’t understand can you not delete it, what do I have to do ?

Okay, I think I see where the misunderstanding is. By "you" were you were referring not to me but to yourself or anyone else as the original poster? You can edit a post or delete it's content entirely but there is a time window for doing so. I am not sure you can entirely delete the post altogether as opposed to leaving it blank. I'm not sure how that works for blogs but PM Scott Adams.

Sorry, I see a typo in my previous post. I meant to type, I'm "just" a moderator and I don't have the ability to delete posts or blogs. That requires full administrator privileges. You need to send a personal message to Scott Adams who is the forum administrator in order to get that done. Scroll to the top of the page and look in the upper right corner. There is an envelope symbol there. That's the PM tool. Click on it and click on "Compose New." Then type in "Scott Adams" without the quotes in the "To:" box. That will pull up his PM address. Click on his address to insert it in the "To:" box. Type in your subject and add your request in the lower, larger box and then click on "Send." The PM tool is like in house email.

Send Scott Adams this request using the built-in personal messaging tool ("PM" we call it). I'm must a moderator and to delete things requires full administrator privileges. 

Or could it be the other way around? Could celiac disease be the underlying cause of dairy intolerance? By the way, Jackie, are you sure your problem is lactose intolerance and not casein intolerance. Many people mistakenly think they are lactose (the sugar in milk) when they are really casein (one of the proteins in milk) intolerant.

Also, did you mean to create a blog about this rather than a normal forum thread?