How Strict Do We Need To Be?

[Judyin Philly]

THANKS SO VERY MUCH FOR YOUR TIME AND EXPERTICE.

VERY INTERESTING RESULTS.

JUDY IN PHILLY

[ravenwoodglass]

"I've been gluten-free for the most part. I cheated bigtime on a trip to Hawaii (and paid for it dearly). I don't worry too much about oats cross contamination, and I eat rice and corn and oat cereals with "malt flavoring".....

I looked at conditioners/shampoos and lotions, etc tonight and found wheat in one conditioner (Yves Rocher) and one shampoo/condit - Herbal Essence. But, I'm not yet worried about them."

If you have DH it will not clear up until you eliminate all gluten. This includes in your toilletries, makeup, soaps and laundry detergents. I also would take the biopsy results with a grain of salt as they say. If the doctor did not biopsy the correct area, the biopsy needs to come from tissue adjacent to not in the sores, it could show a false negative. I am shocked sometimes by the people I know who are gluten-free who complain to me that they are gluten-free but still having symptoms and then state their doctors are puzzled but the doctors also told them to keep using gluten filled toiletries.

"I crave bread, pastry, cake, cookies, toast, waffles, pancakes and IHOP in CENTRAL PARK!~!!!!!!!!!!!!!"

And you do know the addictive nature of this toxin is one of the reasons for your cravings? This part of the withdrawl won't go away if you continue to injest enough gluten to keep the addiction active. It's like quiting drinking for an alcoholic, yes even a little bit will hurt.

[Lisa]

GOING BONKERS HERE..BEEN SEARCHING ON THIS SITE FOR 1/2 HR..WHERE IS THE ORIGINAL POST OF WHERE RADMAN SUGGESTED LISTING ALL SYMPTOMS SO HE CAN COMPLILE IT???? SINCE MOST OF MY SUPTOMS ARE THE SAME AS MOST OTHERS WITH A FEW OTHERS...I'D LIKE TO DO A COPY AND PASTE..YOU ALL KNOW MY STRENTH IN SPELLING

CAN SOMEONE CLUE ME IN WHERE THAT POST FIRST APPEARED...?

THANKS FRIENDS

JUDY IN PHILLY

Post #349

[radman]

Hi Franceen,

Please let us know about the results from the pathology of your skin biopsy. I've read that up to 30% of patients with DH have negative antibody tests, so you may yet be correct in your diagnosis. I would have expected it to improve with gluten free, even if you occasionally cheat. Perhaps you are just very sensitive.

By the way, the biopsy in the case of DH (if properly taken from adjacent uninvolved skin) is much more specific than the biopsy of small intestine for celiac. The skin biopsy is subjected to immunofluorescence "staining" for IgA. The result in DH shows a "granular" pattern of IgA deposits in the dermal papillae (upper layer of dermis). This is diagnostic and highly specific.

At least if it is positive for DH you will have a diagnosis and specific treatment.

I also crave bread products, or I should say I really miss them. Tonight I grilled hamburgers on the grill for the family. I had mine on a gluten free roll, but it was disappointing, even when I tried to camoflage the taste of the roll with a big burger and a big slice of onion. It just gave me bad breath.

Plus, I went for a motorcycle ride with some buddies today. Stopped for a quick beer. I debated ordering a scotch, but that didn't sound wise or appropriate for the circumstance. I had a Coke. Really missed my Guinness.

Oh, one last thing- you inquired about my gender- As Austin Powers would say, "I'm a man, man". (otherwise I guess I would be radwoman )

[Canadian Karen]

Radman,

What kind of gluten free bun was it?

When I have hamburgers, I use Kinnikinnick, but not the buns, I use their english muffins. Believe it or not, they are delicious! Keep them frozen and just take one out when you need it. What you do is nuke it for 50 seconds, then cut it in half, then you can either toast it or put it in the toaster oven and toast just lightly. It is incredibly moist and fluffy. My personal favourite is having it with lunch meat and cheese, but a hamburger goes just fine also!!!

As for the coke, all I can say is, smart man. Motorcycles and beer and/or liquor don't mix!

Take care,

Karen

[jerseyangel]

The very best gluten-free hamburger bun I ever had (when I was still on grains) was Grandma Ferndon's--hands down. The downside is that their shipping costs are super high. But the buns--m-m-m

[Guest BERNESES]

radman- Thanks for the staats. It was very interesting. Actually I was cracking up when I saw the n=20 because in the last year I've taken three educational stats classes and all I could think about was doing a multiple regression analysis for interaction between symptoms and related disorders. maybe I'll make that my summer project (or not ).

My initial symptoms were:

reflux (been on meds since 1987)

depression/anxiety (1989)

sensitive stomach/vomiting/nausea (since childhood)

constipation 9since childhhod)

When it really kicked in (2004):

20 lbs weight loss

black tarry stools

foul stools

foul gas

sleeping 12-14 hours per day

depression

no energy

extreme brain fog

vomiting/nausea

cramping

acne

[jerseyangel]

Bev--What do you take for the reflux? I've been on Prevacid for about 3 weeks now, and it is working very well. Is it something you have to continue indefinately?

[Rusla]

Radman,

What kind of gluten free bun was it?

When I have hamburgers, I use Kinnikinnick, but not the buns, I use their english muffins. Believe it or not, they are delicious! Keep them frozen and just take one out when you need it. What you do is nuke it for 50 seconds, then cut it in half, then you can either toast it or put it in the toaster oven and toast just lightly. It is incredibly moist and fluffy. My personal favourite is having it with lunch meat and cheese, but a hamburger goes just fine also!!!

As for the coke, all I can say is, smart man. Motorcycles and beer and/or liquor don't mix!

Take care,

Karen

I was wondering how those English muffins tasted.I almost bought them up at Amaranth the other day.I know Kinnickinnik's bagels are great. Now, I know the English muffins are good

also.

Radman,

Were these your cave dwelling buddies you riding bikes with? Obviously coke is not considered wimpy. Alcohol does not go with great operation of motor vehicles, just like Karen said. Of course I had to dodge a drunk this morning on my way to work at 0400. It was really scary, he almost ran me off the road three times.

[Canadian Karen]

Hey Rusla,

I LOVE your new signature!!!!

Hugs.

Karen

[Rusla]

Hey Rusla,

I LOVE your new signature!!!!

Hugs.

Karen

Thanks Karen. I think we can use gluten a scape goat for everything.

[Guest BERNESES]

Hey- Patti- I take Nexium 40 mg. It works so well. I've been on medication for reflux since I was 18. I was on pepcid then zantac and now Nexium. I will stay on it indefinitely because my esophagus is damaged and they want to prevent further damage.

Rusla- I love your new signature too!

[radman]

Hi folks,

I have a thought for all those with severe reflux- consider getting an evaluation for surgical correction of the reflux. The current procedure is called a Laparascopic Nissen Fundoplication.

Long term use of proton pump inhibitors (Aciphex, Nexium, Prevacid, Prilosec) is concerning for many reasons. In fact, I was on them myself for about 6 years, and my desire to stop them is partly what led to me finally diagnosing my celiac.

I have been struck by the rapid rise in the incidence of lower esophageal adenocarcinomas in my practice. Nationally there is an unmistakable spike in these cancers over the past 10 years. They are thought to be related to chronic reflux, but if the proton pump inhibitors prevented these cancers they would be decreasing not increasing. There is a theory that "alkaline" reflux (the stomach acid is eliminated by the drug, but the stomach contents, now alkaline, continue to reflux into the lower esophagus) may explain this. This is conjecture at this point, but the rapid increase in esophageal cancer is fact. The surgery fixes the problem which is not acid, it is that stomach contents can reflux into the esophagus. A mechanical problem should be fixed with a mechanical solution.

These drugs also cause diarrhea, and they also result in a chronic state of hypergastrinemia (due to lack of the normal feedback loop from stomach acid). This hypergastrinemia may be associated with tumors called neuroendocrine tumors (such as carcinoids).

Forget the details if this is Greek to you, but my advice is not to use proton pump inhibitors for prolonged periods (years) if possible. These drugs disrupt a complex physiologic system in our bodies, and we do not know all the possible health ramifications of this. Short term or intermediate term this is not a problem. If you have reflux requiring use of proton pump inhibitors for many years or indefinitely, then the surgery is an appealing option.

I think I'll try those Kinnikinnick English muffins

[Mr J]

....And Mr. J has some interesting comments, plus his post is even longer than most of mine

Never considered myself an addict, though I've run across a number of doctors that are over the years. Hmm, gluten addiction, I don't think so.......

er yes, a general problem i have with msg boards is that when i start to mentally formulate my reply i find various things need to be taken into considereation to cover various aspects of my response. then things start to get too complicated and i give up responding. Once in a while i get my act together and manage a reply but it can be rather long. fortunately not everyone on the msg board has my problem. What a great thread you started! 28 pages so far and still going

a bit behind on topic of the moment but i can't help you regarding maintaining your social standing. I'm a milksop i'm afraid, takes me 3 days to finish a bottle of Ramapo gluten free beer. just went to the fridge so i could post the size of the bottle, otherwise the 3 days to finish a bottle statistic wouldn't really be meaningfull would it? you see what i mean by posts getting complicated. yes where was I, 12 oz bottle, how much is that in ml, => just went to google calculator tool => 12 US fluid ounces = 354.882356 ml, so that puts my consumption into context for euro msg board readers. i'll have half a wineglass or so of this stuff just before lunch (if its a weekend) and with evening meal. What you might find interesting is that I mix in some Creatine Monohydrate into the beer wow that stuff is good for my sporting activities! I was really surprised, paddling for a wave on my surfboard can be a rather exposive activity necessetated by desparation to catch the wave. I got onto this stuff when i realised that my power had decreased and despite going gluten-free hadn't regained all of it so suspected something wrong with Kreb's or ATP cycle (all theoretical of course i can't actually look inside my cells to see whats going on, i'm not the creator) well anyway it really gives me more power and by sparing my muscles means i'm not so wasted for endurance paddling either. same applies to bicycle except i don't really push myself on the bike except for the occassional sprint at traffic lights.

=> just went to the cupboard to check the supplement - Jarrow Formulas brand. I take about 3 or 4g a day (dosage on bottle is 6g but i'm a small bloke) i think it works for me coz i'm generally struggling for adequate nutrition, someone who can eat a decent amount prolly doesn't need it.

it doesn't dissolve great in beer, so i don't waste the crystals that remain behind in the glass, i mix it with some homemade chicken broth, dissolves well in the warm liquid, then finish it off.

don't ask me about the long term dangers of this stuff, i don't know yet. but i'm desparate. many of us here are desparate, my body seemed to go into accelarated self destruct mode about 2 yrs ago. which reminds me you were speculating that at age 42 you didn't think you would get any further autoimmune diseases, from your professional observations you would be in a better position to bet on such matters than me, but i developed peripheral neuropathy at age 43, so everthing is a guess.

creatinine monohydrate is not the sort of thing that is taken immediately prior to activity, obviously beer and surfing don't mix but i have to surf on an empty stomach anyway otherwise i get reflux (lying prone on board). mentioned that coz at least when i started typing this (about 1/2hr ago) the topic of the moment was ant-acids. i take prevacid before carb meals, that means twice a day everyday. just the 10mg standard strength is enough for me. i find that i don't always need it, but got fed up with betting on when i would/wouldn not need it, so dispensed with the guesswork. i figured that if my doc prescribed me a daily dose of super strenght 40mg then its safe to take everyday?

i had some creatinine monohydrate in the gluten-free beer today, its a sunday and celebrated some good N Cal surf today. there is the question of whether i should be surfing with osteoperosis (10 times more likely to break spine) water is soft but once in a while my board hits me (or i hit rocks), but i'm not prepared to wrap myself up in cotton wool.

cheers,

Mr J

PS hopefully i've provided enough info to be of interest and justify the file server space this semi off topic response takes.

also of possible interest is that i don't have malabsorption (tested by enterolab and kaiser), no stetorrea either. so goes to show that nutrient malabsorbption can be selective and just coz the test only test for fat absorbption, doesn't mean that other things go missing. it takes a scan to show i have osteo too, wouldn't know just from external appearances. i suppose another relevant pt is that although i think the osteo started before the gluten induced symptoms started to show, i don't think it occurred in early childhood coz my teeth are holding up well, so guessing that they were formed at a period of adequate nutrition.

PS 2. just thought of something which re-inforces my assessment of the Creatine supplement (can be hard to figure out whether the supplement is having just a placebo effect or a real help)... before i took this, hard activity frequently produced a muscular twitch under my eye, i haven't had this at all since my daily intake of Creatinine. but only been using this a month and half or so, so as was mentioning don't know if it will have bad long term effects.

... takes me 3 days to finish a bottle of Ramapo gluten free beer....

btw 12 oz bottle comes with a convenient screw cap which can be replaced. thus allowing me to return it to fridge without going flat the next day

[shayesmom]

Hi folks,

I have a thought for all those with severe reflux- consider getting an evaluation for surgical correction of the reflux. The current procedure is called a Laparascopic Nissen Fundoplication.

Long term use of proton pump inhibitors (Aciphex, Nexium, Prevacid, Prilosec) is concerning for many reasons. In fact, I was on them myself for about 6 years, and my desire to stop them is partly what led to me finally diagnosing my celiac.

I have been struck by the rapid rise in the incidence of lower esophageal adenocarcinomas in my practice. Nationally there is an unmistakable spike in these cancers over the past 10 years. They are thought to be related to chronic reflux, but if the proton pump inhibitors prevented these cancers they would be decreasing not increasing. There is a theory that "alkaline" reflux (the stomach acid is eliminated by the drug, but the stomach contents, now alkaline, continue to reflux into the lower esophagus) may explain this. This is conjecture at this point, but the rapid increase in esophageal cancer is fact. The surgery fixes the problem which is not acid, it is that stomach contents can reflux into the esophagus. A mechanical problem should be fixed with a mechanical solution.

These drugs also cause diarrhea, and they also result in a chronic state of hypergastrinemia (due to lack of the normal feedback loop from stomach acid). This hypergastrinemia may be associated with tumors called neuroendocrine tumors (such as carcinoids).

Radman,

I have to agree with you whole-heartedly on prolonged use of proton pump inhibitors. Over the past 9 years, my mother has been on every single one of them and none have alleviated her symptoms. Of course, I suspect Celiac but she's been in for several endoscopies with no diagnosis to confirm and wields her "negative" results to parry the suggestion that she go completely gluten-free.

What did end up working for her was a very inexpensive home remedy. She now takes a teaspoon of raw and unfiltered apple cider vinegar with honey each day about 30 minutes before meals (sometimes, she only does this once per day). She then takes an Omega 3-6-9 and a magnesium supplement (this has especially helped with migraines which I think may have been a result of a magnesium deficiency due to the constant reflux). Anyway, this combination has worked really well and she has only had about one or two bouts of reflux per month for over a year now. Obviously, her problem wasn't mechanical in nature but was probably one of low stomach acid which could contribute to the stomach not emptying the way it should.

I probably should also make the comment that taking too much of a magnesium supplement can and will cause diarrhea, so people should consult with a physician or research this out on-line before self-medicating. In any case, it is a relatively safe option to explore and has worked for many people.

And as for Guinness......that is probably one of the things that I miss most. Used to love going out to microbreweries and enjoying a GOOD beer. Looks like that's a thing of the past. There are only two gluten-free beer varieties being sold in our area and I have tried them both already. lol!! No real excitement there but it will do in a pinch. Too bad there are no "health food bars" that would stock up on gluten-free beer. It would be nice to go out and enjoy a beer with friends without going through the mental list of "safe" alcohol options. I guess that I am lucky my dd came along when she did. I didn't have the option of drinking for her first two years of life and during pregnancy and by then, I figured out our gluten problems. So I had a few years to get used to not having any alcohol.

[Guest Robbin]

Mike, What brand is the creatine monohydrate you use and is it a powder? Do you have any side effects from this? I have severe muscle weakness and have been eating more protein but can't seem to build muscle. I have a goal of getting well enough to do the Appalachian Trail part-way in 1 year, and am working hard to get well enough to do this. Been sick way too long to waste any more time. You can pm me with details and info on this if you want.

Radman, Thank you so much for the information. My dh is a statistician (actuary) and is always asking me "what percentage of the forum posters have this, or that?" , so now I can give him more accurate info than my "guess-stats"! (This man is a math/stat nut--he actually asked a waitress to give him 50% of a regular serving of mayo on his hamburger one time and my teenage son wanted to move to another table in embarassment--I'm used to him, so I give him percentages on things like you are down to 10% clean underwear in your drawer-I say it joking, but I get the feeling he doesn't think it's that funny!!! ) Great thread--it keeps getting more interesting. I'm a fellow Virginian-- Love VA!!

[ravenwoodglass]

I have been struck by the rapid rise in the incidence of lower esophageal adenocarcinomas in my practice. Nationally there is an unmistakable spike in these cancers over the past 10 years. They are thought to be related to chronic reflux, but if the proton pump inhibitors prevented these cancers they would be decreasing not increasing. There is a theory that "alkaline" reflux (the stomach acid is eliminated by the drug, but the stomach contents, now alkaline, continue to reflux into the lower esophagus) may explain this. This is conjecture at this point, but the rapid increase in esophageal cancer is fact. The surgery fixes the problem which is not acid, it is that stomach contents can reflux into the esophagus. A mechanical problem should be fixed with a mechanical solution.

Radman, I wonder, with you being an oncologist, what you would see if you routinely gave your patients a complete celiac panel? My DD had severe GERD but only minor preceliac changes were visible on scope and biopsies. Her GERD was gone for good after she went gluten-free. I wonder if there is a corelation between people who have GERD and are also celiac and the formation of these cancers when the GERD is treated but the celiac or gluten intolerance is not discovered.

[Guest BERNESES]

radman- Forgive me if I'm wrong, but isn't esophageal cancer one of the most notoriously difficult to treat? I've been on the inhibitors for years and I just recently saw a surgeon about gall bladder surgery and she said I need to be vigilant about getting scoped every year because even if I don't have symptoms- I still have reflux. This is one thing that has not gotten better on the diet. I see my GI this week and I'll see what she has to say about it.

[jthomas88]

A GOOD pizza crust can be found in Carol Fenster's "Cooking Free" cookbook. The pizza (crust & sauce) recipe is also available online here: Open Original Shared Link . EVERYONE in the family likes the crust, and we use Classico's Tomato & Basil sauce for our pizza and spaghetti sauce.

I like this book a lot better than any of several Bettie Hagman books I've borrowed/own.

[radman]

raven:

I have been thinking the same thing. Not to screen all patients, just those that may be related to celiac. The largest group of patients would be lower esophageal adenocarcinoma. I've been considering sending celiac panels on those patients to see if there is a correlation.

Bernses:

Yes, esophageal cancer has a poor prognosis overall. Most patients present with fairly advanced disease. Surgery cures very few patients (<20%). Chemotherapy and radiotherapy with or without surgery increases the odds to perhaps 30%. Still, 70% of patients ultimately succumb.

Prevention is clearly the best bet. Again, I think a surgical fundoplication may be the best way to do this if you have chronic severe reflux.

jthomas:

Thanks for the pizza crust link. Have you used rice flour or garbanzo bean flour?

Today I had lunch at Chipotle and had a burrito bowl. What a great restaurant for celiacs! So many choices.

By the way, I mentioned to the dietician at my office today that I self diagnosed celiac. She told me she has been wondering if she may have it since she has had problems with indigestion and gas. She's gonna go gluten free and see if her symptoms improve

[VydorScope]

By the way, I mentioned to the dietician at my office today that I self diagnosed celiac. She told me she has been wondering if she may have it since she has had problems with indigestion and gas. She's gonna go gluten free and see if her symptoms improve

Wway to spread the word! Preach on! err or somthing

[ravenwoodglass]

raven:

I have been thinking the same thing. Not to screen all patients, just those that may be related to celiac. The largest group of patients would be lower esophageal adenocarcinoma. I've been considering sending celiac panels on those patients to see if there is a correlation.

The reason I would do all patients and not just the obvious GI related malignacies is because gluten really seems to be a systemic toxin, for one thing, and also because even if these folks don't have a gluten related malignacy there is some research that has show many cancer patients do better on a gluten free diet. I believe this is because they were gluten intolerant and didn't know it. There is so much added stress to the body and mind when one is fighting a disease of this type that many undiagnosed gluten intolerant people might be able to tolerate the therapies better if gluten wasn't increasing their discomfort. Gluten intolerant people also tend to suffer an excaberation of problems when stressed and the gluten intolerant may also become full blown celiac with their symptoms be attributed to the therapies. Just a thought.

[megsylvan2]

I have been struck by the rapid rise in the incidence of lower esophageal adenocarcinomas in my practice. Nationally there is an unmistakable spike in these cancers over the past 10 years. They are thought to be related to chronic reflux, but if the proton pump inhibitors prevented these cancers they would be decreasing not increasing. There is a theory that "alkaline" reflux (the stomach acid is eliminated by the drug, but the stomach contents, now alkaline, continue to reflux into the lower esophagus) may explain this. This is conjecture at this point, but the rapid increase in esophageal cancer is fact. The surgery fixes the problem which is not acid, it is that stomach contents can reflux into the esophagus. A mechanical problem should be fixed with a mechanical solution.

Forget the details if this is Greek to you, but my advice is not to use proton pump inhibitors for prolonged periods (years) if possible. These drugs disrupt a complex physiologic system in our bodies, and we do not know all the possible health ramifications of this. Short term or intermediate term this is not a problem. If you have reflux requiring use of proton pump inhibitors for many years or indefinitely, then the surgery is an appealing option.

This scares the bejeezus out of me! I live in fear of intestinal cancers. (Family hx.)

I also have reflux and was on Prevacid, which my gastro said to keep taking because of the risk of esophageal cancer. But the holistic dr followed your philosophy and said I'd be much better off not taking it. But I have such inflammation and pain in the sternum area. It doesn't feel the same as the reflux did, though. Had endoscopy in Dec, which did not show anything, so I guess I'm ok. But I forgot about silent reflux and I guess I never really understood the ramifications of reflux. I guess I'd better pay better attention to this. I'm going to try a new doctor, so I guess I should discuss this issue. Never knew there was any surgery or any types of treatment for this other than the acid reducers. The mechanical solution you mention does make sense. THanks for mentioning it. I'll have to investigate.

[Guest BERNESES]

The reason I would do all patients and not just the obvious GI related malignacies is because gluten really seems to be a systemic toxin, for one thing, and also because even if these folks don't have a gluten related malignacy there is some research that has show many cancer patients do better on a gluten free diet. I believe this is because they were gluten intolerant and didn't know it. There is so much added stress to the body and mind when one is fighting a disease of this type that many undiagnosed gluten intolerant people might be able to tolerate the therapies better if gluten wasn't increasing their discomfort. Gluten intolerant people also tend to suffer an excaberation of problems when stressed and the gluten intolerant may also become full blown celiac with their symptoms be attributed to the therapies. Just a thought.

I think this is a really good point!!!!!!! Gluten free seems to help many conditions- depression, autism, IBS and other digestive issues, chronic fatigue and now you mention cancer.

[Fiddle-Faddle]

Radman, can you tell us more about this surgery? How new is it? What are the risks? You make a frighteningly good case for it--I've been on proton pump inhibtors for a decade now, but even after a couple of gluten-free months, I can't seem to get off them (I'm on Nexium and tried to switch back to Zantac, but it didn't work nearly as well.)