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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Chicago Celiac Center Response Regarding Dgp And Ttg
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18 posts in this topic

so I sent the following e-mail back in April when I had just found out I had a negative biopsy to UCCDC, and wanted to share my questions and the responses I've received.

 

Questions:

is it possible to include in your FAQ section an answer explaining exactly
what Deamidated gliadin peptides are in layman's terms? I have seen it
written in very scientific terms, but a simple explanation on your website
would be a great addition. thanks for your consideration.

Are raised DGP igG levels thought to be a first sign of early celiac? If it
was only gluten intolerance, your body shouldn't be producing any type of
antibodies, correct? I recently had high DGP igG levels, but a negative
biopsy. Is there any current research being conducted regarding a high DGP
score with a negative ttG score, and if that means you are on your way to
developing full blown celiac disease? thank you.


 
Responses: 

To the first point:  

Elevated DGP antibodies are often seen in celiac patients on a gluten-containing diet. They appear to have exactly the same value of the more established TTG-IgA antibody, and offer no advantage over TTG. However, it appears that in the very young child (i.e. in the first 2 years of life) with celiac disease DGP are a better test.

 

To the second point:

Correct: if it was only gluten intolerance (now we call it "non-celiac gluten sensitivity") DGP shouldn't be present. We are not aware of any research showing that a high DGP score with a negative ttG may represent early-onset celiac. A negative TTG and a negative biopsy essentialy do rule out celiac. Why is DGP-IgG elevated then? I don't know: but no test is - if taken alone - 100% diagnostic of anything in medicine.

 

 

*start rant-I will say I appreciate the honesty in saying they do not know why the DGP-IgG was elevated, but if no single test is diagnostic in medicine, why do they tell people they have HIV after giving them a screening test?  maybe because it has a high sensitivity and specificity, just like the DGP  :P  I truly wish they would do more research and studies on the DGP tests related to adults instead of only children-end rant*

 

Happy weekend, everyone!

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Oh NO :(  Powerofpositivethinking....  now you'll never get any sleep.

 

As you know I'm still in the process of getting diagnosed.

Personally if I got a positive DGP-IgG, I'd have a parade down the street.

 

 

 

1. I don't agree with: "A negative TTG and a negative biopsy essentialy do rule out celiac."

 

 

From my readings, DGP-IgG is more specific than a postive tTG which can have other causes.

I mean DGP = Deaminated Gliadin Peptide... what else can it be?

 

So in your case I think they missed the villi damages in the biopsy.

Maybe you had villi atrophy or damage lower down in the small intestine or they just missed it in the biospy.

 

 

 

2.  The type of gluten the food industry adds to whole wheat bread is already Deaminated so maybe your immune system reponded to it directly without a damage to the villi.  

That is something I wonder about and hope they research it one day.

(http://en.wikipedia.org/wiki/Gluten_immunochemistry)

 

 

 

You could do a panel again but  your positive DGP - IgG is good enough for me.

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Hmmm. Most people do not have a bunch of positive scores on tests it seems. That would exclude a LOT, I would guess at least half, of the people around here... I don't know, it's almost like saying that you are not truely pregnant until you get at least two different positive tests.

 

Besides, you have had a positive response to the gluten-free diet right? I would consider that a positive test too, and that's two - what else could it be?

 

Hugs to you. try not to doubt. you are doing better now and that is the main thing.... even if it is frustrating to have doubts.

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Hi Powerofpositivethinking,

 

Here is a web page I had with some links to more published articles on Celiac serology.

 

 

http://pubmedcentralcanada.ca/pmcc/solr/mlt;jsessionid=17EE30642407E4E350A6047CA8566837.eider?mltid=1596420&idtype=acc&term=&pageSize=25

 

 

That should keep you busy   -_-  

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nicole and marcus, 

 

thanks for your responses  :)

 

I wasn't going to send a response back to UCCDC, but I decided to anyway.  If people don't ask for things, how will the medical community know there is a need for it?  Here's my response:

 

"Thanks for your response.  I hope that future research leads to more definite answers of what an elevated DGP means in adults, even if damage is not found during the duodenal biopsy, and those individuals are not igA deficient.  I am benefitting from a gluten free diet, and before I started I was found to have low cholesterol, albeit not from eating a low fat diet, am deficient in Vitamin K and D, and have low potassium.  With the diet I'm eating I shouldn't have had a problem from any of these, so I am working with my doctor to see if gluten was really the cause for these abnormalities.  I do not expect you to respond, and I am grateful for what UCCDC has done to bring celiac disease awareness to the forefront.  As future research is conducted, please consider studies with elevated DGP iga and igg in adults without iga deficiency and what they represent.  Again thank you for all of the work UCCDC is doing to bring awareness to celiac disease.  Hope you are enjoying your weekend!"

 

In the book Celiac Disease for Dummies, there is this quote that lingers in the back of my mind, "Unless your celiac disease is very severe, it is highly unlikely you will be deficient in vitamin K, and neither routinely testing for this nor use of vitamin K supplements is necessary."

 

If GottaSki hadn't posted the list of nutrient testing to request, I wouldn't have even gotten tested for it.  Under my insurance, they only test for vitamin K1, but my level was <0.13 in a reference range of 0.28-1.78, and I eat a lot of vitamin K rich food  :wacko: 

 

Marcus-I agree that maybe the deaminated level was a product of food to some point, and maybe that is why some people have low levels in their blood, but mine wasn't a low level, and then why didn't I have a DGP-igA to match it?  I don't expect you to answer this, but I'm just putting it out there  ;) btw, thanks for the links to pubmed  :) 

 

I was pretty upset after my biopsy results, but had come to terms that I would be gluten free because I do notice a positive difference.  Marcus, I am happy and thankful that something did show-up on my blood tests, and please keep us updated on your results!  I had sent this e-mail back on 4/13 to UCCDC, so when the response showed up in my inbox yesterday, I was more than a little surprised  :lol: 

 

Ever since I was little, I was the child that drove my parents nuts by asking the "why" questions to better understand.  It's just part of my nature, and I don't plan on giving up that part of my personality anytime soon or ever  :P 

 

Happy Mother's Day to all  :) 

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We think they missed celiac in your biopsies.

 

How many were taken, and how many did they look at? 

 

Did theycount the number of IELs?

 

Did they do the new tests, immunohistochemistry? The sample has to be frozen for that.

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Hi Nora,

 

Here is my info on the procedure report:

 

"Normal duodenum bulb, 2nd portion of the duodenum, and 3rd portion of the duodenum.  8 biopsies taken."  

 

On the pathology report it reads, "Biopsy, duodenum: duodenal mucosa with no pathologic change; no evidence of celiac disease identified."  

 

that's all it lists in regards to the duodenum.  i had found an article regarding mice and that absorption of cholesterol takes place mainly in the jejunum and ileum.  http://www.jlr.org/content/45/7/1312.full.pdf

 

my B12 was a strong number within range, so it led me to think that maybe I have damage in my jejunum, but from my report my biopsies were all taken from the duodenum.  With every answer I think I have then I have another question that pops up.  If vitamin D, K, A and E are fat soluble, why were only D and K deficient?  Then I found that with low cholesterol, I read that total cholesterol under 160 was cause for concern, and mine was 135, your body cannot properly synthesize Vitamin D from sunlight because cholesterol is needed for that.  Here's my main thread if you're interested http://www.celiac.com/gluten-free/topic/99439-need-help-with-tests-results-please/

 

to me reading about medical info and nutrition is far more interesting than fiction  :P

 

I am getting a repeat celiac panel draw along with vitamin K and D sometime in June, so it'll be interesting to see what those results say  :)

 

 

We think they missed celiac in your biopsies.

 

How many were taken, and how many did they look at? 

 

Did theycount the number of IELs?

 

Did they do the new tests, immunohistochemistry? The sample has to be frozen for that.

Edited by powerofpositivethinking
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Hi Lisa... About vitamin K

I found this information in my library book on Celiac by Dr David L Burns.

On page 145 he write...

Vitamin K: a fat soluble vitamin made by intestinal bacteria that helps to clot blood.


Also on page 145...

"The colon is full of bacteria - mostly beneficial - that aid in digestion
and even produce some vitamins such as folic acid and vitamin K"

He goes on to explain about bacterial overgrowth.

I'm thinking your low vitamin K could be due to not having the correct bacteria in your colon.

(from my memory I believe there is more than one kind of vitamin K
because on Dr Oz there was a doctor who mentioned a kind of vitamin K
that was made by the bacteria in aged cheeze and then there is another vitamin K
in the green leafy vegetables so consider that in your investigations)

The cheeze the doctor on Dr Oz recommended eating I think was Elmental (spelling?).
But I think any aged cheeze would be good.
I don't recall if the vitamin K was in the cheeze
or just as a way of introducing the right bacteria into your colon.

I suspect it's both.

 

It would be an interesting experiment to eat aged cheeze to see if this increases your vitamin K.

 

.........................................................................................................................................

 

 

As for cholesterol, I heard it's mostly produced by the liver and that the dietary cholesterol

has not much impact on your blood serum cholesterol but I could be wrong.

Did your doctor do liver blood tests?

 

My cholesterol was always low but in recent years it is high but the ratio is good.

 

Again from Dr Oz a guest doctor explained that it's a subgroup in the LDL that

is the bad one, not just the LDL total.

My PCP didn't know this and the blood test for that sub group isn't done in Canada

but Dr Oz says it's available (in the U.S.).

 

You are right to be curious about your cholesterol levels and if this can indicate where is the damage.

 

................................................................................................................................................

 

 

As for vitamin D please consider my experience...

 

 

I was taking about 1000 ui of vitamin D daily.

I'm not a guy who likes to stand in the sun as I get dizzy.

Mushrooms and sardines are high in vitamin D but I didn't eat those.

 

In investigating another illness my PCP found that  my D.25 was  low normal.

My vitamin D 1.25 the active form was way over the limit.

This is because  the kidneys produce vitamin D 1.25

Granulomas also produce vitamin D 1.25 independently from diet or sun.

 

There fore when you get tested be sure to be tested from both D .25 and D 1.25

to compare the 2 kinds of vitamin D and that will give you a better story of what

is going on in your body.

 

I'm off vitamin D and we will test it all in the future again.

 

 

Here is a  video that I used to understand vitamin D:

 

Understanding Vitamin D

Medical educational piece created for Abbott Labs

 

.............................................................................................................

 

About your question about diaminated gliadin that you asked me...

when I read this artlcle

http://en.wikipedia.org/wiki/Gluten_immunochemistry

 

I got the impression that maybe some people have a direct immune response to the DGP from gluten added to foods like whole wheat bread vs white bread and not from the DGP produced by the tTG.

 

 

 

....................................................................................................................................

 

Why DGP-IgG vs DGP-IgA?    

 

 

I've read some articles about this such as...

For instance DGP-IgA is sensitive for people with liver problems but not DGP-IgG

DGP-IgG is better test chilidren under 2 years old.

 

 

I don't fully understand everything but when I was reading tTG-Iga vs tTG IgG

I read the difference is that it has to do with whether it pertains to B cell or T cell response. 

So that could be why you reacted with DGP-IgG vs IgA.

It could be T cell vs B cell which is where you should direct your research.

 

 

These  article talks about this.

 

http://pubmedcentralcanada.ca/pmcc/articles/PMC2653384/

 

http://en.wikipedia.org/wiki/Gluten_immunochemistry

 

 

 

.................................................................................................................................

 

This one is quite fascinating but I haven't finished reading it yet:

 

http://physrev.physiology.org/content/91/1/151.long

 

 

I have so much to do... 

 

 

.................................................................................................................................

 

I hope this doesn't add too much confusion to your research.

Unfortunately I'm not super smart to fully understand these articles.

I'm a research type myself for my own issues and my PCP loves this to a point.

I think he's the only person who understands me.

He's the one who said I have aspergers. Do you?

Please put the monkey back! I liked him !
He cheered me up everytime I saw him.

I became addicted to the monkey. 

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The cheeze the doctor on Dr Oz recommended eating I think was Elmental (spelling?).

Emmental cheese is likely what he meant. It is commonly known as Swiss cheese.

ETA: The only purpose of this post is to clarify the obscure cheese reference. It is not a comment on the content or merit of Marcus' post.

Edited by psawyer
Clarification
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Thank you Peter.  :)  

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Hi Lisa... About vitamin K

I hope this doesn't add too much confusion to your research.

Unfortunately I'm not super smart to fully understand these articles.

Please put the monkey back! I liked him !

He cheered me up everytime I saw him.

I became addicted to the monkey.

For a Newbie, you sure post a lot! Love the enthusiasm! but- I don't think I would post articles I didn't understand. How do you know they apply? :)

And I liked the monkey, too!

Edited to say: Not trying to be harsh, Marcus. I love that you want to help. :)

Edited by Lima Bean
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thanks for all the replies!

 

I put the monkey back.  he is pretty cute, and he happens to be playing the best instrument ever  :rolleyes:   I had changed it to the beach because it's almost beach season in Delaware.  yay!!!

 

No, I've never been diagnosed with Aspergers.  though interestingly enough those with Aspergers and autism tend to do well in music, and I teach music.  I have trouble keeping eye contact and have anxiety to a certain extent, but they have both improved going gluten-free.  In fact this time of year is school concert season, and normally, I would be having trouble sleeping, but I feel so much more relaxed.  there was an awesome article the other day on cnn.com about a girl with autism who found her place in the school band http://www.cnn.com/2013/05/08/health/autism-music-bullying-irpt  we all have our place in life  :)

 

I was only tested for Vitamin K1 because it is the only one LabCorp tests.  K1 is found in plants, K2 is made by the bacteria in the large intestine, but now how much seems up for debate.  see below.  Here's more info on Vitamin K http://lpi.oregonstate.edu/infocenter/vitamins/vitaminK/

 

"Bacteria that normally colonize the large intestine synthesize menaquinones (vitamin K2), which are an active form of vitamin K. Until recently it was thought that up to 50% of the human vitamin K requirement might be met by bacterial synthesis. However, research indicates that the contribution of bacterial synthesis is much less than previously thought, although the exact contribution remains unclear."

 

 

my liver enzymes were tested and were in the normal range.  

 

 

 

He's the one who said I have aspergers. Do you?

Please put the monkey back! I liked him!

 

I'm not eating dairy for the time being, but maybe I'll give Swiss cheese a try again in the future.  I've never really had a taste for it  :)  I thought maybe I was going too far giving up gluten and dairy, but I ate some yogurt covered, gluten-free pretzels a few weeks ago, and by that night my leg muscles were hurting the next day so were my joints.  that was my cue to stay away for now  :P

Emmental cheese is likely what he meant. It is commonly known as Swiss cheese.

ETA: The only purpose of this post is to clarify the obscure cheese reference. It is not a comment on the content or merit of Marcus' post.

 

 

Nora,

 

I have read they save your biopsy slides for awhile.  Would it be possible to request they do a IELs count and immune cell study on them, or do those two things have to be done right after the biopsy?

 

I see they did not count the IELs, nor did they do any immune cell studies on the biopsies. Often they only do that at university hospitals.

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2724402/

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Didn't the top researcher (or someone) for celiac do this guideline:

 

If you have 4 out of the 5, then you have celiac:

 

Symptoms on gluten diet

Symptoms resolve off gluten diet (positive response)

Positive blood test

Positive genetic test

Positive Biopsy

 

I could be wrong...

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nope, shadowicewolf, you are correct  :)

 

mushroom gave me the info, and here is the link to the Dr. Fasano article

 

http://www.glutenfreeliving.com/Browse/file/GFL_Fasano_interview.pdf

 

it starts at the bottom of p. 42.  problem is he doesn't list DGP as one of the tests because this article was from 2010  <_<

 

Didn't the top researcher (or someone) for celiac do this guideline:

 

If you have 4 out of the 5, then you have celiac:

 

Symptoms on gluten diet

Symptoms resolve off gluten diet (positive response)

Positive blood test

Positive genetic test

Positive Biopsy

 

I could be wrong...

Edited by powerofpositivethinking
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i found this article on pub med

 

http://www.ncbi.nlm.nih.gov/pubmed/21063208

 

maybe I need to ask to have my slides reevaluated since there wasn't actually anything written on my report regarding Marsh scale or IELs.  All it stated was, "Biopsy, duodenum: duodenal mucosa with no pathologic change; no evidence of celiac disease identified." 

 

 maybe their definition of no evidence of celiac disease is I didn't have total villous atrophy.  if there were uniform tests and standards, it would make it a lot easier :) should I ask my doctor first if they tested for IELs, or should I try calling the lab to see what they did, and if they'll release that information?

 

 

i'll wait to see my blood test results next month, but since I don't live that far from Philadelphia, there are actually two dedicated celiac centers in the region...

Edited by powerofpositivethinking
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as I was searching the Chicago Celiac Center website, and I inputted DGP, this now the first link that appears:

 

http://www.cureceliacdisease.org/archives/faq/are-raised-dgp-igg-levels-an-early-sign-of-celiac-disease

 

even though it doesn't clearly answer the question, it's the name of a test I got a positive on three times, and I can send this link to family members to help back me up.  oh happy day  :)

 

 

so I sent the following e-mail back in April when I had just found out I had a negative biopsy to UCCDC, and wanted to share my questions and the responses I've received.

 

Questions:

is it possible to include in your FAQ section an answer explaining exactly
what Deamidated gliadin peptides are in layman's terms? I have seen it
written in very scientific terms, but a simple explanation on your website
would be a great addition. thanks for your consideration.

Are raised DGP igG levels thought to be a first sign of early celiac? If it
was only gluten intolerance, your body shouldn't be producing any type of
antibodies, correct? I recently had high DGP igG levels, but a negative
biopsy. Is there any current research being conducted regarding a high DGP
score with a negative ttG score, and if that means you are on your way to
developing full blown celiac disease? thank you.


 
Responses: 

To the first point:  

Elevated DGP antibodies are often seen in celiac patients on a gluten-containing diet. They appear to have exactly the same value of the more established TTG-IgA antibody, and offer no advantage over TTG. However, it appears that in the very young child (i.e. in the first 2 years of life) with celiac disease DGP are a better test.

 

To the second point:

Correct: if it was only gluten intolerance (now we call it "non-celiac gluten sensitivity") DGP shouldn't be present. We are not aware of any research showing that a high DGP score with a negative ttG may represent early-onset celiac. A negative TTG and a negative biopsy essentialy do rule out celiac. Why is DGP-IgG elevated then? I don't know: but no test is - if taken alone - 100% diagnostic of anything in medicine.

 

 

*start rant-I will say I appreciate the honesty in saying they do not know why the DGP-IgG was elevated, but if no single test is diagnostic in medicine, why do they tell people they have HIV after giving them a screening test?  maybe because it has a high sensitivity and specificity, just like the DGP  :P  I truly wish they would do more research and studies on the DGP tests related to adults instead of only children-end rant*

 

Happy weekend, everyone!

 

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      Hi Richard Glad you are feeling better!   Sorry - DX is an abbreviation for diagnosis.   Thanks so much  for the info about MSG, broccoli and IBS.  Like you say, there is v. little bad press about broccoli. My aunt, who is a farmer's wife, put forward another theory that it might not have been the broccoli itself but rather some insecticide a farmer sprayed on it.   I just can't bring myself to try organic broccoli however...  Thankfully cauliflower is fine.  I just can't figure it out as I thought they were the in the same vegetable family?  So maybe it is MSG. Regarding anemia, there can be a link with iron anemia and anxiety. http://www.livestrong.com/article/471225-iron-anxiety/ And I was definitely breathless before my diagnosis; I remember finding myself  walking up a hill behind a  huge crowd of friends on a church walk, and many of them were at least 20 years older than me, and wondering why I was in last place! My B12 levels were very low at DX and I found B12 supplements helped enormously with anxiety.   I remember drinking Berroca and feeling so much better within hours of drinking it, on more than one occasion, before even understanding the link. I have just been told however that I can't take any more iron because my hemoglobin is on the high side.  It is a good thing my doctor was monitoring my supplementation as I gather too much iron can be dangerous.  Have you been told to supplement by your doctor?  If you are supplementing make sure you get your levels monitored. All the very best - and welcome to the forum!    
    • Weird Reaction
      Thank  you Flowerqueen and Cristiana for your replies. I'm actually feeling much better today. I got my appetite back yesterday lunchtime (a few hours after I typed the original post) and managed to keep in/hold down some chicken and lettuce!!! I also had a "fat" coffee (as I call it) before work with MCT Oil and butter (your probably going "yuk" right now but it's really nice...really haha) and started feeling a bit better after that. The nausea went away almost immediately after that although just the thought of having all that fat nearly made me sick but I just wanted to get back to normal asap. I usually have a lot of fat in my diet anyway which is normal for me so the coffee choice isn't unusual. Plus it was also the third day which was when I started feeling better after the first time. I didn't eat til lunchtime and I was good and hungry by then so I knew I was coming out of it. That nausea and trembling feeling is something I don't want ever again. I think after the workout and tearing down muscle tissue (which is a form of stress) and then not being able to hold the nutrients in for repair affected my nervous system. My theory only but to me it makes sense. Although Vitargo also comes in flavors I always get the Natural / Unflavored one so the barley is the only ingredient. As for there being something wrong with that particular batch, well, you be on to something there. Also I'm not knocking the product because as I said, I have used it before and it did exactly what it was supposed to do. But, I will never have it again. Cristiana, my last blood test revealed I had slight anaemia which really surprised me with the amount of red meat I've eaten during my life and the anxiety thing is also new as I'm usually a happy, positive person. Life is good but after this recent reaction I think it is an indirect cause of the glutening. I'm also surprised at how sensitive I've become to it and how quickly. Also what is DX? I also follow a FODMAP eating plan (I can give you more info if you haven't heard of it) which also eliminates certain foods. It's a plan directed mostly at IBS but is well worth looking into if you are suffering any gut health, digestion issues or any ailment you may have which you can't get to the bottom of. Broccoli was one of the foods which I have cut back on and I've eaten HUGE amounts of broccoli so it is a superfood for some but apparently not for others. (I even think I read somewhere it has MSG naturally in it) It's hard to find any bad articles on broccoli so this also really surprised me. It also answered a few other questions I had. Many, many thanks again to you both for your replies. It actually settled me just reading them. I'm glad I found these forums so I don't think i'll be a stranger around here for long.   Richard
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