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Member Since 25 Aug 2006
Offline Last Active Today, 07:58 AM

#942739 Is Coffee Allowed On Fasano's Gluten Contamination Elimination Diet?

Posted by on 23 March 2015 - 12:58 PM

The problem I have with this diet is that the foods they cut out are foods that would be irritating to the gut anyway, regardless of whether or not they are supposedly contaminated, so you will never be able to know for sure what caused the slower healing.  They allow fruit juices, which are incredibly irritating to the gut lining yet no coffee, no matter how pure, is allowed?  That's just plain silly.  If I drank a glass of OJ, I would be in a world of hurt yet whole bean coffee, that I grind myself, produces no problems, no matter how much I drink.


christiana....your symptoms of tingling are neurological in nature and those can take a VERY long time to clear up, no matter how clean your diet is.  Mine took 3 years and I was uber strict with my diet and cooked everything from scratch.  I also think that most of us continue to have sensitive stomachs, compared to the general population who are used to eating crap, so when you eat something with a lot of fiber in it, like popcorn, lentils and gluten-free oats, it might bother you, regardless of what happened before diagnosis.  You may not have noticed it before diagnosis because you weren't feeling good all over.  I did not pop with lactose intolerance, or at least didn't notice the symptoms, until 2 years into the gluten-free diet.  Certain things, to this day, will bother me and it's not gluten. For some of us, complete healing just takes a long time.

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#942448 Daughter's Ttg Suddenly Doubled

Posted by on 18 March 2015 - 12:23 PM

I hate to say this, greenbeanie, but without doing proper follow up testing by the doctor, you may be looking for gluten exposure that does not exist.  You would think the money for all this testing was coming out of the docs pocket!  <_<


Doing a tTg without the DGP is useless.  tTg does not, and never did, test for dietary compliance, as you well know.  You have to do the DGP every single time to make sure the elevated numbers are not from gluten exposure.  That is Celiac 101 and the doc should know this.  Also, testing just the TSH is another useless tool for seeing how the thyroid is doing. As someone with Hashi's, this drives me insane when they do this and it double pisses me off when they do this with kids.  She is growing and needs her organs to be functioning well. 


I really think that unless you get the doctor to do proper follow up testing, you may have to find another one.  It sounds like you have all bases covered with regards to lifestyle needs so looking into other AI conditions is just the right thing to do.  I wish you the best of luck!

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#941921 Is There A Good Hamburger Bun Out There?

Posted by on 11 March 2015 - 07:31 AM

I never waited to try gluten-free bread because I was a skinny Celiac and was 20 pounds underweight at diagnosis so had to eat bread.  Never once did I compare it to wheat bread and actually, the gluten-free bread tasted amazing to me because I was not getting sick from it.  I have never once missed wheat bread.  It did not keep me from healing well, either, and I had little to no villi left at diagnosis.


The Canyon Bakehouse rolls are very close to that wheat crap people seem to like nowadays, only much better because it won't make you sick.  ;)   Udi's is very good too and I prepare them like someone above suggested.....brushed with olive oil and grilled on a grill pate, until crusty golden brown.  Slap a burger on that and you will wonder why people hate being gluten free!  :)

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#941522 Afraid Of Colonoscopy/endoscopy

Posted by on 05 March 2015 - 10:16 AM


If your biopsy comes back fine—congratulations, you’re not suffering the inflammation and villous atrophy that most of us have had to deal with!

However if the “optics” of your endoscopy suggested celiac disease, your biopsies will likely confirm this. IF you’ve stuck to a gluten-inclusive diet (have you?)
If you have some optical change in your gut, but a clean biopsy, there are a variety of other conditions that may cause some inflammation or visual difference in the proximal gut, all of which are treatable & manageable. Your doctor should have next diagnostic steps for you if that is the case. There are also a number of “functional” disorders, which mean that though you’re experiencing frustrating symptoms, there’s no damage in your gut. Again, these are treatable.
Glad to hear the procedures were no big deal. I’m sure Joan Rivers was having a more complex procedure—and was also eighty-plus! We live in a good time, inasmuch as the sedative drugs used for these procedures are safe and very effective. I’ve had two endos in two months, and likely another one this year; I’ve learned to shrug them off. Last time I got mad at my GI for not sedating me enough!!


A negative biopsy does not rule out Celiac Disease.  If there is inflammation of the small intestine or changes that can be seen with the naked eye, it very well still could be Celiac, regardless of a negative biopsy.  Patchy damage is patchy damage and this is where people get bad info from doctors when they don't hit the right spot.


If the biopsy comes back negative for Celiac, the next step would be to do a gluten free trial and have genetic testing done, to see if it's even possible to have the genetics to trip for the disease.  There may also be signs of early damage from Celiac, such as increased numbers of IEL's or scalloping of the duodenum.  All of this should be taken into account before excluding Celiac.

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#940708 Glucose From Wheat

Posted by on 20 February 2015 - 09:36 AM

Sunny.....if you choose not to eat something because you think it contains gluten, that is your choice. The reason things are different than it was 20 years ago is because education and knowledge and testing protocols are much better. Glucose from wheat is safe for Celiac's and the testing proves it. Same with tocopherols used in many products....safe, safe, safe! This is not the same thing as eating a donut.

I am every bit as sensitive as you are, nearly died from this disease also and that is no exaggeration. Yet, on occasion, I have trailed this product and never ever once had any exacerbation of symptoms. I do not eat this often at all because it does not appear in the foods I regularly eat but it definitely will not kill any Celiac if they ingest it from time to time. While Celiac Disease can kill some people, the vast majority of people diagnosed are far from dying so let's not be overly dramatic about it. I am fully healed and that never would have happened if I were ingesting gluten that would spark an AI reaction. Common sense and science people!!!!!!!
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#940183 What Thyroid Meds Do You Take?

Posted by on 10 February 2015 - 01:27 PM



Here is some good information on natural thyroid hormone.  I use Nature-throid with good results but did use levothyroxine for years and stopped because once I healed from Celiac, it just wasn't doing it's job and I needed to use one with T3.  It is gluten free and so is Armour.  This information also goes into detail about the ingredients in natural thyroid hormone and explains what each one is for.....fillers and all. 


People get overly worried about gluten in thyroid meds.  Yes, we need to check everything but I have yet to find one that actually did contain gluten and I have been taking various thyroid hormones for well over 20 years now and have never been glutened by any of them.  Synthroid does not guarantee gluten free status but that is just a disclaimer and does not mean it is not gluten free.  I would never use Synthroid because its a brand name and costs a fortune here in the US, unless that has changed.


Endocrinologists fear natural thyroid hormone because they are taught in medical school that they are not consistent with dosage and probably, these companies do not buy doctors lunch.  ;)   But they are safe and work well for many.  They are also much cheaper than most brand name, synthetic hormones and are easily affordable out of pocket.  I am in the US.  Remember, natural thyroid hormone were the ones originally used, until synthetics came about.  I stick with what works.


Good luck!

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#939700 Hormones, Hashi's And Celiac- How Does This All Work Together?

Posted by on 04 February 2015 - 09:24 AM

No dreading allowed.....and I should be the last person to say that!  ;)   You have classic, textbook symptoms of low thyroid so your doctor is going to have to think hard

on solutions.  Some of us are more difficult to treat and you still have the Celiac healing thing going on.  That means there is still inflammation getting in the way of recovery and stability but it will all get better as time goes on......you know that.  It's getting things somewhat stable for this period of time that can be challenging.


Looking forward to hearing how it goes....... :)

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#939348 Weight Gain Advice Needed, Please (Newbie Near Death)

Posted by on 29 January 2015 - 10:41 AM

I was in your shoes 10 years ago and was suffering from severe malnutrition. I was 20 pounds underweight.  Doctors have a tendency to fear monger.  I did as Kareng's mother did....I ate a snack or some food every 2 hours and concentrated on nutritionally/calorie dense foods that I could tolerate.  Over the next 6 months, I started to gain weight and get my life back.  I found those 20 pounds eventually and am healthy now.  Don't worry......you don't need IV nutrition and you will recover.  The human body can take a lot of abuse and still come out well on the other side.


Hang in there, Newbie!  :)

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#939342 Are 4C Gluten Free Bread Crumbs Really gluten-free?

Posted by on 29 January 2015 - 10:09 AM

They know that their bread crumbs are a possible source of cross contamination due to being processed on shared equipment. They are purposely misrepresenting their product without that information. That makes it false advertising which is not allowed.

 They are in fact targeting the portion of public who can be made extremely ill with this falsified information. It is a crime in the US to bait consumers into purchasing a product with falsified information.


I reported a company for such behavior. The government forced them to stop endangering people using the above argument . The law is flexible enough to protect people.

I think, Sunny, that you need to reassess your learning curve for gluten free living because many of the posts you make contain incorrect information or border on baseless fear of products. If you want to restrict your diet unnecessarily because you think everything contains gluten, you are free to do so but advising other's incorrectly is a bigger blunder than ratting out companies based on incorrect accusations about their products. 


These breadcrumbs have been tested and pass for certification.  You can easily call to see what level they test down to.  I bought some recently to try, based on other Celiac's recommendations they were safe.  These are smart, highly sensitive, diagnosed Celiac's whose recommendations I trust.  I'll let you know when I use them how it all turns out but I'm betting they are safe.


Shared facilities is not the same as shared lines, period.

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#938843 Low Vitamin B12/d...6+ Years Post-Diag?

Posted by on 22 January 2015 - 09:18 AM

If you live in a northern climate, you most likely will be deficient in Vitamin D, Celiac or not.  If you wear sunscreen all the time, you most likely will be deficient in Vitamin D.

It is also a fat soluable vitamin and people with Celiac can have trouble absorbing fats for life......I do.  It is much improved since going gluten-free but my body still does not like high fat meals...which no one needs to eat anyway....unless you are strictly eating good fats only.  As we age, the GI tract doesn't work as well as it did in our youth so all of these can combine to make obtaining good levels difficult.


Vitamin B12 absorption can be difficult in the absence of intrinsic factor in the stomach.  You might want to read up on that.  You may need injections for a while to get your levels up and then maintain that with vitamin supplements.  Vitamin deficiencies can be tough to change in older celiacs and they can be improved but it might take some work to find the way that works for you.

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#938460 Wonky Blood Tests Esp. Liver Enzymes Tests (Or Liver Function Tests In The Uk)

Posted by on 14 January 2015 - 01:26 PM

Hi Christiana!


I have been diagnosed with celiac for almost 10 years and I had elevated blood protein when diagnosed.  I had other wonky blood work also, like elevated liver enzymes. All resolved on a strict gluten-free diet.


Celiac makes the liver angry and it is very common to have elevated enzymes for awhile after diagnosis.  It can take quite awhile for these things to normalize. Doctors are just going to run other blood work to make sure it is nothing more serious, which can happen with long undiagnosed Celiac.  You were eating food that was totally detrimental to your health so "stressing" out your internal organs happens.  I was 46 when diagnosed and went a LIFETIME with symptoms but I am fine today and I am no spring chicken, either!  :)


The blood protein issue was the same with me.  I had elevated protein, not bad, but out of range of normal.  So, off to the hematologist I went.  I did a lot of research on it beforehand and had a good conversation with the doc about it.  I actually found research which stated that Celiac Disease can raise protein levels and the electrophoresis test is important because elevated protein levels can signal Multiple Myeloma.  I also have 3 other AI diseases from going so long without a diagnosis so it was pretty much a foregone conclusion my blood work would be wonky.  (I really love that word!)  It took quite a while, around 4 years from diagnosis, for that to normalize but I think it was the combo of 4 AI diseases which made it that way.  I am an optimist to the core who hates going to any doctor for anything so I did not let it phase me after doing the research.  I felt good at the time so didn't worry unnecessarily about any nasties happening. 


The immune system is made up of proteins so when this goes haywire and your immune system starts to attack various body parts, it is more or less hyperactive.  It would make sense that it could raise overall protein levels due to all that inflammation.  As long as you don't cheat and eat a healthy gluten-free diet, the inflammation calms down over time and levels normalize.


I still have some wonky results like low white cell counts and my red cell counts will never be stellar (low end of normal) but I feel good, exercise and eat right so don't worry about it.  Low white cell counts are normal for people with AI disease and it is only a problem if a person is getting sick all the time.....which I am not.


I do not know how long you have been diagnosed or on a gluten-free diet but have patience. If your levels normalized, it is highly likely they will stay that way...if you follow the diet as you should.  The reason you had more testing is because you went to a GI doc and they tend to be more thorough, but that is not always true.  I never went back to a doctor, except my thyroid doc, for any testing because I did not have a PCP at the time, just my thyroid doc.  I had her run the Celiac antibody re-check yearly.  It's a long story but I got screwed over like many people did over the years and still have trust issues with the medical profession.  I found a great PCP about 3 years after diagnosis and she ran a slew of tests and found the elevated protein.  I think it all depends on a persons experience in diagnosis on why some have more testing done than others.  I personally just do testing that I think is important because I am not spending the rest of my life running off to doctors.  Now that I am healthy, I have a life to live!  ;)



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#936123 Feel Like There Is No Answer

Posted by on 04 December 2014 - 11:09 AM

If anyone is still reading this thread..... I am curious to the reaction he is having going back on gluten.


He has been back on gluten for a little over a week now.  The first few days, I thought he was have no side effects of going back on a gluten diet, but over the first 9 days he has only pooped 3 times.  The first 2 times were sludge, like always, this last one was very hard (but still the pale color) and he had a hard time going.  This may not sound like a big deal, but typically he poops 3 (or more) times a day.  Is this a sign that the gluten is affecting him, or could it just be a change in diet in general?  Thanks for any insight!  I know that constipation can be a symptom for celiacs, but it has never been a problem for him.  It has been diarrhea for almost a year now, extreme while on gluten, but still going on even when he was gluten free.

The symptoms he is experiencing could defintely be from resuming gluten.  ESPECIALLY the pale colored stool....a possible sign of fat malabsorption.  Maybe they could also do some stool testing to check to see if that is happening?  That is an easy test.  Lots of people alternate between constipation and diarrhea with Celiac but the docs like to call that IBS.  ;)


I know some docs like to think that they can find damaged villi by a certain age, and I am sure this doctor is trying to help by taking lots of samples but a negative biopsy on a small child does not rule celiac out.  It can take YEARS for damage to accumulate to the point where they hit a sweet spot.  Here is a paragraph from the University of Chicago Celiac Disease center, which outlines what to look for during the biopsy. The increased intraepithelial lymphocytes are often an early indicator so checking for this is very important.



Definitive diagnosis depends on a positive small bowel biopsy and a demonstrated response to a gluten-free diet. Diagnostic criteria include architectural changes in the small intestine, including mucosal villous atrophy with crypt hyperplasia and increased intraepithelial lymphocytosis. The rate of change may be slow and the changes nonspecific.

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#935920 Feel Like There Is No Answer

Posted by on 02 December 2014 - 11:44 AM

Thank you for the info.  We are going to be testing everything this time, but now I am in the waiting game for the next 2 months.  Just put him back on a "normal" diet (besides dairy) for the gluten challenge.  Then she is running all kinds of blood work and likely doing an upper and lower GI a week later (as soon as the blood results are in).  Can you give me some insight on what "other immune" problems could be causing the ttg -igg to be elevated?  I have heard reasons for the ttg iga to be elevated but there doesn't seem to be much info out there on elevated ttg igg.  Thanks in advance!

I am sorry you are going through all this as it is beyond frustrating.  The more common associated conditions that can trip the IgA-tTg are thyroid disease, autoimmune liver disease, Crohn's Disease or Type 1 diabetes.  This does not mean a person has them, as you know, but the possibility is there.  You are also correct in that there is little out there with regards to IgG-tTg and what an elevated number may mean.  However.......


Testing is such a crapshoot in a 2 year old as they do not have a mature immune system.  This is why people go years before a diagnosis can be officially made because it can take years for enough damage to occur and for the immune system to mature to obtain a valid test.  But you have some positives here.  Your son's growth changed for the positive on the gluten-free diet.  I know there is still a problem with loose stools but that can take awhile to go away completely AND there could be additional food issues that haven't been pinpointed yet. 


My niece has a now 11 year old son who had Celiac related issues from birth.  I was diagnosed with Celiac shortly after he was born.  He was scoped at the age of 2 and the GI doc (who was an idiot as far as I am concerned) said no celiac.  His duodenum was inflammed but of course, in a 2 year old, good luck finding damaged villi.  So, he counseled against the gluten-free diet.  Honestly,where do these people get their licenses to practice medicine?????? I am this child's blood related aunt and I nearly died from undiagnosed Celiac. His duodenum was inflammed and he counsels against the gluten-free diet as a trial?  My niece, unfortunately, is one of those who believe whatever the guy in the white coat says so he was never placed on a gluten-free diet. This kid had severe muscle weakness in his neck and could not lift his head as an infant until much later than many because of it.  He is so undersized, it is not funny...he is the same size as his 7 year old brother.  He has since developed asthma and has developmental problems.  So, he is now in the "honeymoon" phase of Celiac and some of his symptoms have receded from meds and the hormones that are starting to kick in.  It drives me absolutely crazy to see this and still no gluten-free diet being tried and he is the size of a 7 year old.  They think he is getting better because symptoms often go away during the teen years, only to return with a vengeance later in life....just like me.  This poor kid is going to wake up one day with a multitude of AI problems and crappy health all because some arrogant GI couldn't find damaged villi when he was 2 years old and he didn't trip the blood test then.  I don't even think they have retested him since and I just wanna scream, at times.


I think it a good thing you are doing what you can do to have your son tested but if everything comes back without clear answers, I would say put him back on a strict gluten-free/dairy free diet and see what happens.  Four months is not very long to get any definitive answers, even in a 2 year old but the growth thing is saying something to you.  Test away for now and let us know what the outcome is.  Hang in there because sometimes, this takes longer than we like! 

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#935569 Celiac Disease And Thyroid Issues - Do They Go Hand-In-Hand Or Are They Separ...

Posted by on 24 November 2014 - 06:59 PM

Hashi's does occur frequently with Celiac and I think you'll find that if you have undiagnosed Celiac for long enough, all that inflammation does not just cause damage to the small intestine. The immune system starts to attack other organs and the pancreas and thyroid gland seem to be the most popular targets. My Hashi's diagnosis came 20 years before the Celiac diagnosis but in hindsight, I triggered for Celiac at a very young age. The damage showing on my adult teeth when they came in was proof of that.

I would say that yes, having Celiac can cause other AI diseases to happen, as a result of prolonged inflammation and other genetic factors that may come into play. Ask anyone with multiples, like myself. I don't need a fancy study to figure that out.

I would say to try the gluten-free diet for awhile and see if your symptoms calm down. If they do not, and your tTg remains on the higher side for too long, then thyroid testing would be in order. As suggested, it would help to have your thyroid antibodies checked because that will tell you if thyroid disease is brewing.
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#935496 Feel Like There Is No Answer

Posted by on 22 November 2014 - 05:41 PM

You said the DGP was normal and that is the test which tests for dietary compliance. The actual number is important with this test because the lower the number, the better dietary compliance is.

If the tTg-IgG is elevated while the DGP is not, then I would look for other autoimmune related problems to Celiac which may be going on because, as was mentioned earlier, certain other related conditions can elevate tTg. Usually it's the IgA which is elevated with other conditions but if the overall Total IgA is low to begin with, then there might be a deficiency so it wouldn't probably elevate with other conditions. People then look to the IgG testing for answers.

I have Hashi's thyroid disease also and it took awhile for my tTg-IgA to come into normal because of that. My testing for dietary compliance, which was the AGA-IgA and IgG back when I had it done, came down to really low numbers after 1 year gluten-free. The longer I was gluten-free and my thyroid calmed down, the lower my tTg got. I am not sure if other related conditions would raise IgG but it's worth looking into.
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