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Member Since 26 Dec 2007
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#900315 Aricept For Celiac-Induced Neuro Symptoms?

Posted by GFinDC on 20 December 2013 - 11:03 AM



People sometimes  have a gluten withdrawal effect after stopping gluten.  That may last a couple weeks.  If you do a search on gluten opioids you will find articles about gluten acting like opioids on the brain.  The good thing about that is you can stop eating gluten (as you have) and recover.  It takes time though for symptoms to resolve.  You may feel much better in a few weeks and then regress and feel worse also.  Celiac recovery can be a bumpy road.


As your gut heals and starts absorbing vitamins and minerals better your tissues can heal.  But it is process, not an instant fix.

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#899276 My Son Needs Help.....

Posted by GFinDC on 11 December 2013 - 03:44 PM

Hi BKBoerst,


It is probably going to take a while for his gut to heal.  Months to a year or more.  I suggest you take it easy on the processed gluten-free foods at first.  A simple diet of whole or minimally processed foods is much easier to digest and less likely to be irritating to the gut.  It is also simpler to avoid gluten if you use whole foods instead of processed foods.  When people start the gluten-free diet, they often have bad reactions to many foods.  The gut is damaged and irritated, and not much makes that feel good when thrown at it.  Spicy foods are a bad idea.   It might help to get him to tell you what foods he likes to eat.  Eating lots of protein can help with healing, as the body needs protein to rebuild tissues.


Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.
Watch out for cross contamination.

Helpful threads:

FAQ Celiac com

Newbie Info 101

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#898506 Ncgi, Malabsorption And Depression

Posted by GFinDC on 06 December 2013 - 02:15 PM

You are welcome Spudinator!


I don't know if you have read about the so called leaky gut issue and the possible zonulin influence on it?  In celiac disease the intestinal barrier works differently than it does in non-celiacs.  There is a tendency for larger particles of proteins to get through the gut layer.  Those particles can wander around and affect different parts of the body, via the blood stream.  So that might be true in NCGI also, and a possible explanation for depression symptoms.  There are articles about gluten fragments affects resembling opioids affects on the brain.  That is a possible explanation I figure.  I am not a researcher or doctor so those are just my big thinks on the subject.  Even in celiac disease, the symptoms are often not localized in the gut, but can be spread throughout the body.  There are quite a few people who have neural symptoms but no gut symptoms too.  So the affects are not limited to the gut.  Could zonulin be "off" in NCGI like it is in celiac?  Maybe, we don't know.  or maybe there is a similar issue in NCGI but a different process.  NCGI may be very similar to celiac but not involve the gut attack that occurs in celiac.  This is all just speculation tho.  But that's about all we have available at the moment.





And then in the mid-‘80s, a group of Japanese scientists said, well, actually the spacing between cells is not cemented.  They are doors, almost always closed, but they are doors.  And that was quite an interesting discovery.  And then over the years, more and more information came about, you know, how these doors are made, but what was the missing link was what kind of molecule, substance, or signal or whatever would modulate these doors so they can be opened and closed.  And that’s where we stumbled by mistake studying celiac disease that we make a molecule that we call zonulin that regulates the permeability of this space.  And again, through celiac disease we learned that this molecule is produced in excess, in an exaggerated fashion, by people with celiac disease, now finally explaining the inexplicable, how this protein can come through, because now if you have this door stuck open, everybody from the environment can sneak into our body, including gluten, and with that, trigger the autoimmune response.  So that led us to put forward this new paradigm in which the recipe for autoimmunity is made not by two, but three ingredients:  You have to be genetically predisposed, you have to have an environmental factor that is the instigator of the immune response, but at the same time you have to have a breach of this barrier so these two elements can interplay.

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#898426 Ncgi, Malabsorption And Depression

Posted by GFinDC on 06 December 2013 - 02:33 AM

Hi Spud,


NCGI may be an immune response, but not the same type of immune response that is active in celiac disease.


Very little is really known for sure about NCGI.  The studies referenced in the articles below say that the symptoms of NCGI and celiac are the same.  Why and how they get to be the same is not known.  We may know a lot more about NCGI in the years ahead, including the whys and what-fors.  But for now we are not there.


Non-celiac wheat sensitivity article

Innate immune response in AI diseases

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#897098 Finally Diagnosed And Wondering If I Have To Live In A Bubble...

Posted by GFinDC on 24 November 2013 - 02:57 PM

So what have you got against bubble people anyhow?  The new bubbles these days are very nice.  Come on in, there's room for two of us! :)  I saw the sun just last week, and heard neighbors outside talking.  Was a bit close, but not too disturbing... :ph34r:  (insane crazed emoticon guy here)


You might want to look up celiac support groups in your area.  The CSA and others are  present in many areas.  Some of them have dinners and meetings and share gluten-free food and stuff at times.  They also may have great tips for bubble living in your area.  Did you know windex/ammonia is now frowned upon for bubble cleaning?  A spit shine is preferred by the in crowd.


If you do come visit, bring your own bean bag.  No hard chair legs are allowed in my bubble!  Oh, could you bring some pictures of the sun and flowers too?   Creeping back inside now, bye! :D





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#894821 Severe Muscle Wasting

Posted by GFinDC on 05 November 2013 - 01:13 PM

Hi Totoro!  Welcome to the forum! :)


I suggest you print this thread out and give it to your doctors to read.  They probably don't understand your symptoms are as severe as they sound.  Seeing it in writing might help them get the picture.  Maybe your parents should read it too.


Ok, weight loss with celiac disease is caused by damage to the villi that line the intestine.  Those villi are what absorb nutrients into the bloodstream.  When they are damaged they can't do that job effectively.  If you have celiac disease eating more gluten will just make you sicker.  Even if you eat a ton of it you will only get sicker.  You do need to keep eating gluten until your celiac testing is completed though, or the tests may fail.  The normal tests are a full celiac disease antibody panel and then an endoscopy of the small intestine.  In the endoscopy they take multiple biopsy samples to have a lab check them for villi damage.


Your doctors should also test your blood for nutrient levels, vitamins and minerals.  Celiac makes it hard to absorb nutrients so we can become low on some vitamins.   That's another clue.


It is important to get the testing done and get a diagnosis.  Celiac disease is a serious autoimmune condition and should not be treated lightly.  You can recover and be just fine on the gluten free diet but you do need to spend some time reading and learning about how to eat gluten-free.  Cross contamination (cc) is a real problem and needs to be avoided.


Helpful threads:
FAQ Celiac com
Newbie Info 101

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#894141 Too Limited Diet, And Still Sick. Not Sure What To Do...

Posted by GFinDC on 01 November 2013 - 12:50 PM



Carbs are way overrated IMHO.  You don't need to eat lots of carbs to be healthy.  Refined carbohydrates are quickly converted into sugars in the gut.  So you might as well eat a bowl of sugar.  That's really not a healthy way to eat.  You should always have some protein with your meals.  Protein provides long lasting energy instead of a "bounce" like carbs do.  If you are not able to function without carbs there is something wrong.  You should get your blood glucose checked in that case.

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#893164 One Study Said 60% Of Celiacs Are Not Healing Just With Diet.

Posted by GFinDC on 23 October 2013 - 07:25 AM

This was posted by the administer recently.  http://scoopsandiego...039af5dd4a.html


I guess there may be a lot of reasons for not healing .  This is a thread to see what your ideas are.  Also, do other studies find that 60% are not healing?


Hi Diana,


To answer your question, I think sometimes people don't heal quickly because they are experiencing damage from other food intolerances, or they are not really as gluten-free as they think they are.  Especially for beginners, it seems to take a while to get used to avoiding gluten.

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#890239 Do You Take Your Celiac Disease Seriously?

Posted by GFinDC on 30 September 2013 - 06:37 AM

I do take the gluten-free diet seriously.  But I can understand why people new to the gluten-free diet may not take it seriously at first.  In my case I ate gluten most days for 5 decades before some knucklehead told me I couldn't do that anymore or I would die.  That is kind of hard to take in at first.  After all, it didn't kill me for 50 years so it seems strange to think it suddenly would.  But things do change.  Inlcuding our bodies.  So after a while it sank in and I stuck to the diet as best I could.  Which wasn't great at first, since I didn't understand where gluten could "hide" in foods.  But people on this forum helped me understand that cross-contamination matters, and a dirty toaster can really get ya, and you do have to learn to eat differently.  It helped a lot that my body confirmed what they were saying.

I think a lot of the adjustment to eating gluten-free is learning new eating habits.  People are used to eating whatever they want, whenever they want it.  Going gluten-free you have to learn to eat what is safe, when you can get it.  And if you can't eat safely, don't eat.  Practically, that means people have to learn to plan ahead and bring food with them or research safe places to eat ahead of time.  It can seem complicated at first to have to check every single thing before eating it.  But after a while you learn how to eat safely.  It's a big adjustment for many people, but people can learn new things once in a while. They do tend to make mistakes during the learning process though.

After a while the gluten-free diet is the norm instead of the new thing, and it is easier to eat gluten-free.  People do get used to it.

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#889487 Celiac Or Not?

Posted by GFinDC on 24 September 2013 - 06:10 AM

Did you have the blood antibody tests done while you still eating gluten?  Scalloped appearance in the small intestine is seen in celiac disease.  Scalloping is caused by destruction of the villi lining the intestine and smoothing of the interior surface of the intestine.  My understanding is scalloping is a sign of advanced damage to the villi, not the beginning stages.  Did they tell you your marsh scale number?


Healing from celiac damage can take months or years.  Celiac disease is an autoimmune attack on the intestine and your immune system is always working.  The immune system keeps us alive by always being ready to attack invaders/germs.  So even the slightest amount of gluten can trigger attack.  Plus the immune response doesn't stop in a day, it goes on for possibly weeks in some cases.  That makes it harder / slower to heal as the tissue growing back is also being destroyed.


With that kind of visible damage and positive blood tests, celiac is pretty much the only thing it can be.  Did you have positive blood tests?  Usually they do the blood antibody tests first and then the endoscopy to confirm villi damage.




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#889327 My Haematologist Says I Should Not Change My Diet.

Posted by GFinDC on 22 September 2013 - 12:11 PM

But they won't learn anything about celiac disease by examining your colon. The damage caused by celiac disease is in the small intestine, not the colon.


Right, they'd need to do an endoscopy.  But if the endoscopy is months after going gluten-free, there's a good chance it won't show anything definitive.  Many people can stick to the gluten-free diet easily enough because their symptoms improved after going gluten-free, and they understand the risks to their health of eating gluten.  Another "but" though, people also sometimes have digestive problems for months after going gluten-free.  So an instant return to health does not always happen.  You need to be able to stick with the diet even if things aren't going so great health wise.


Another gotcha, people who go gluten-free and return to eating gluten for a "gluten challenge" to get later testing, sometimes report worse symptoms than before being gluten-free.  Sometimes their symptoms don't go away quickly after resuming gluten-free.  So, it's important (IMHO) to decide for sure that you can stick to the gluten-free diet based on the blood tests alone.  Some people can't, or rather don't.  Personally I believe the positive blood tests and response to the gluten-free diet is plenty sufficient to know that gluten is causing a problem.  Response can be any change in symptoms, including getting worse symptoms.  People who don't have problems with eating gluten shouldn't have any big changes from stopping eating it.  Gluten is not a required food for our bodies to be healthy.


Some countries do offer some benefits to "gold standard" (endoscopy) diagnosed celiacs, like food subsidies.  Medical studies on celiac generally require biopsy proven celiac also.  None of that may be important to you, just mentioning it for reference.

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#888203 Wheat Bran - Try It - It's Great!

Posted by GFinDC on 12 September 2013 - 11:11 AM

Agree, wheat bran should not be eaten by celiacs.  There are other forms of fiber that are safe and not expensive.  Like psyillium husks, citrus fiber, celery and many other veggies.  Candy, there is no need to risk your health by eating wheat bran when there are plenty of alternative fiber sources available.  Fiber does help many people's digestion, and can be a useful thing in the diet.  But stick to the safer forms of fiber that don't have gluten in them.

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#887935 Vitamins In Liquid Form

Posted by GFinDC on 10 September 2013 - 09:14 AM

I think the liquid vitamins are potentially helpful.  If your digestion is in a bad state and the vitamin pills aren't being broken down, then it seems pretty clear they aren't going to help much.  The bacteria in you gut are also important in the absorption and even production of some vitamins.  We really are an amazingly complex symbiotic organism.  So taking pro-biotics may help your vitamin levels and absorption also.


An assortment of related articles on vitamin absorption and gut flora

https://www.google.c...n and gut flora


If you are using oil carried vitamins it is best to keep them refrigerated.  Oils can go rancid and that may affect their vitamin potency.  There was a study of vitamin D pills a while back that showed many are not really accurately labeled.  The study showed many Vitamin D pills are lower in potency than their label says, and some actually contained almost no Vitamin D at all.  But it didn't list the brands they tested.  They suggested looking for the USP mark on vitamins or the NSF International certification.


vitamin D labeling accuracy

https://www.google.c...n and gut flora




One bottle tested in the study was certified by the U.S. Pharmacopeial Convention — an independent organization that sets standards for dietary supplements, and certifies supplements for companies that allow their products to be tested. The amount of vitamin D in USP-certified pills was generally very close to the amount stated on the label. According to the USP, pills should contain between 90 to 120 percent of the dose stated on the label.

"There are not many manufacturers that have the USP mark, but it may be worth the extra effort to look for it," LeBlanc said. Another company that certifies supplements is NSF International.

In the study, the researchers analyzed 12 bottles of vitamin D supplements (each made by a different manufacturer), bought at 5 different stores in Portland, Oregon, and tested five pills from each bottle. The labeled dose on the bottles ranged from 1000 international units (IUs) to 10,000 IUs.

All five pills met the USP standard in just 25 percent of the bottles.

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#886549 Apparently You Guys Were Right, It's All In My Head!

Posted by GFinDC on 30 August 2013 - 07:00 AM

Is there any chance it was something you ate the day before?  Symptoms don't always show up right away.  They can be delayed for a while sometimes.  Just a thot, that it might be worthwhile considering the food from the day before also.  If it was something from the day before you wouldn't want to miss out on identifying it.

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#885949 Fatty Stools And Confusion

Posted by GFinDC on 26 August 2013 - 12:43 PM

I had blood test done for Celiac over a year ago and it came back negative, but according to my new GI he says he wants to make sure I had the right one and that sometimes they don't come back accurate. 



Getting new blood antibody test now is a good idea.  Things can change in a year.  Or much less time.  Make sure to ask for the full celiac disease antibody panel.  And ask for a printed copy of the results with the test result normal ranges.


A few threads that may help.


FAQ Celiac com

Newbie Info 101

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