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 SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
I have been baffled since this was posted. Why couldn't I find any information about the founder of Enzymedica "Tom Bohagen?" as spelled in this post. Because that isn't his name!
The founder of Enzymedica's name is Tom Bohager. A Google search will bring up 37 pages that include his name. It was mentioned that Tom worked as a salesman for an unknown herb company. Actually, I found that Tom had worked for three herb companies prior to forming Enzymedica. One of the companies I am acquainted with is Herb Pharm. I have used their products and they are excellent. I have not used any products from the two other companies that Tom worked for, so I can not comment on their quality.
Tom has a degree in holistic nutrition and has written several books on enzymes and nutrition.
Here is one link with some information about Tom Bohager: http://www.cancercontrolsociety.com/bio2007/bohager.htm
Anyone is interested in knowing more about this man can Google search Tom Bohager. I found some very interesting information there.
I too have a friend who is being treated for fibromyalgia. In conversation, I asked her what her symptoms were. After a few questions and answers, I commented that it sounded like we both had the same disease and left it at that. You know from another thread that I have gluten intolerance and celiac disease, but I'll let the other readers know this too. At the time, the only thing I knew about fibromyalgia was that some people have it and that my daughter who is an RN had told me that fibromyalgia was a name doctors were giving to a set of symptoms that they couldn't explain.
I went home and did some research on the internet and found to my amazement that the possible symptoms of the two diseases are the same. The treatment of fibromyalgia is totally different, and not very successful for most people.
I found a story about a lady who was ready to give up on living due to the symptoms and how a gluten free life totally changed her life. It was included in one of my posts in another thread, but didn't get any comments. I think it may do better here.
Here is the link:
Don't laugh, this is for real. Remember the Chia Pet? An animal made of pottery that you sprinkle these seeds on and they sprout and look like they are growing green hair? I was looking for a replacement for psyllium (Metemucil), as it doesn't agree with me. Chia seeds have a lot of nourishment and have hydrophilic properties. They can be eaten any way you want to eat them. Cook them, eat them raw or add them to water or juice. They provide a lot of energy and a teaspoon is probably enough to make you feel satisfied. They do stick to your teeth though. Here's a link with a lot of information about chia seeds:
Over the many years before I went gluten free, I had good days and bad days. There were times I would go six months to a year with no symptoms. Eventually, I had nothing but bad days and the older I got, the worse the symptoms got until I quit eating gluten. I was diagnosed with IBS. I can't tell you why, but it happened to me too.
Benadryl is an antispasmodic, so it could be helping with the horrible cramping some of us were getting before our intestines started to heal. I took St John's Wort, cramp bark and ashwaghandha. They helped my bowel to relax and many times allowed trapped gas to pass. When our intestines are in that fragile state, it is good to do whatever it takes to relieve any pressure. I would think a person should be careful not to confuse the benefits of any antispasmodic with actual healing though. The relief from antispasmodics are only temporary and if gluten is still being consumed accidentally or otherwise, the damage to the gut will keep getting worse.
I was hurrying to reply to your post because my lunch break was almost over. You asked about the pain. When I had kidney pain, it went from my lower back at about my belt line and ran up my back 6-12 inches. If it was intense, it would radiate around the belt line to my right and left side. It started coming on from time to time at around age 30. I went to several doctors complaining of back pain, not thinking it could be my kidneys. The doctors examined my spine and said there was nothing wrong with me.
As for the stomach pains, they always started on the left side down low near the sigmoid flexure. I guess it would depend on the size of a person's belly, but my pain was about 6 inches left of and 3 inches below my belly button. It always started out feeling like a gas bubble and then got worse from there. When it got really bad it would hurt on both sides, but never as high up as the gall bladder. At times, the pressure would build up to the point that I felt pressure on my left lung.
Most of my life, I have eaten a higher level of fats than is recommended. This didn't ever seem to bother my gall bladder. The bowel needs a certain amount of fat to eliminate properly. I seemed to need it for energy and if I didn't eat the right amount of fat, I would get constipated. I demanded a lot of beef. If I ate fish or chicken, I would be weak and starving soon after I ate. That no longer is the case. Actually, I'm eating less than I ever have, and I have to work at keeping my weight down. I believe I have regained the ability to absorb nutrients.
I had an EGK 3 years ago and my doctor raved about how healthy and strong my heart is, so I guess in my case, the fats I ate were used by my body as lubrication for my intestines and most of it passed through me rather than damaging my heart.
In the 70's, they used soy as a filler in taco meat and some hamburger meat. It always gave me terrible gas. I read that soy is only good for a person if it has fermented. The only soy I consume is in tamari sauce (soy sauce). It is fermented and doesn't bother me.
I started out with a product called Digest. I was having a lot of problems with acid and acid reflux, so I added Acid Soothe. Eventually, more by accident than anything, I had ran out of Digest, but had a full bottle of Acid Soothe so I ended up taking it alone. I found that that product alone was doing the job for me. As I had mentioned way back, the herbalist we deal with gave me a free sample bottle of Glutenease so I could possibly give him some feedback on the product. It came in handy when I accidentally ate a lot of wheat unknowingly. I still carry a few of thin in my pill box, just in case.
As far as the low blood sugar, I have nothing to go on except what has worked for me. I assumed that malabsorption was the cause, but I might get called on that one. I have been taking an amino acid supplement called L-Glutamine since before I found I had problems with gluten. 500 mg a day. My understanding is that it helps the liver to store and release sugars at a more even rate. It also relieves cravings for alcohol. I used to find a lot of comfort in my evening cocktails from my gluten caused problems and gut pains. Alcohol is a quick way to raise your blood sugar. The problem is, a sugar high dumps you quickly and makes you feel worse. Since taking L-Glutamine, I could take or leave alcohol. I have a drink to be sociable, but that's as far as it goes. I also used a product for about two years that contains milk thistle and dandelion. It is said to slowly clean out the ducts in the liver and help it to work more efficiently. I felt that it helped restore some of my lost energy. I haven't taken it for a year or so now. I am going to start taking it again. It is my understanding that the liver does a lot of filtering of foreign matter in the blood and I found it helpful with my season allergies as well as my energy level.
P.S. I am self diagnosed, but the symptoms indicate Celiac Disease.
I'm leading up to a point, so please bear with me on this.
I know that once a celiac, always a celiac, but there are different degrees of the disease. A person may be in early stages or later stages. In my experience, I was in the later stages at around 51 years old. By looking backwards and connecting the dots, I remember that besides the digestive tract problems and trouble digesting lactose, I was having trouble concentrating, I was spacey feeling (felt like my head was full of cotton at times) I was extremely anxious, had a lot of problems with dermatitis, kidney pain and urinary tract infections, which my doctor told me was uncommon for a heterosexual male, but didn't have any help for me other than prescribing antibiotics. I was hungry all of the time and craved fatty, sugary and starchy foods. I didn't lose weight as some people do. I gained weight slowly. My body was still absorbing enough fat and sugar to gain weight. Some people with celiac disease gain weight and some lose weight. Knowing what I know now, and my doctors couldn't tell me then.....I had flattened villi and leaky gut. Symptoms of celiac disease.
Shortly after my 52nd birthday, I went gluten free. Over the last 5+ years, there have been a lot of positive changes. A gluten free diet saved my life! I haven't had a urinary infection for over 3 years. I got my weight under control, the dermatitis on my shins has totally disappeared, my head is clear again and I can tolerate some lactose. I am currently successfully working on controlling my anxieties.
What I am leading up to is that through a gluten free diet, my villi have begun to function again (blood sugar levels are normal and I'm not starving) and the leaky gut has healed (no more urinary infection and kidney pain due to larger particles passing through the intestinal wall).
I can't look inside of my intestines, but I know by the way I feel that I am in a lot better condition than I was 6 years ago. I can imagine that my intestinal wall must have looked like raw hamburger then.
My intestines will never be the same as someone who doesn't have the disease, but they (through proper diet) will never be in the condition they were in then either.
If I started eating gluten again, I would be back where I was 6 years ago, but I don't eat gluten intentionally and the only risk of getting gluten is on the occasions that we eat in a restaurant. No matter how careful a person is about explaining to the restaurant staff, it is very likely that the waiter or waitress or cook has handled gluten prior to touching your dinner plate. The same goes for the bus person who set up the table and handled your water glass and silverware. And who knows what goes on in the kitchen behind closed doors? We don't have a restaurant with a dedicated gluten free menu in our area, but we have been to several when we were on vacations.
If I eat in a restaurant, yes, I am putting myself at risk or consuming gluten through cross contamination. I am well aware of the risks. Taking an enzyme to combat these possible very small amounts of gluten helps me to have no or very little reaction. I will not argue with some of the others that this "could" be allowing "some" short term damage to occur, but the enzymes usually keep me symptom free and after several years of resuming an occasional meal away from home, I have never felt sick as long as I take my enzymes.
Before my gut had a chance to heal, eating out and chancing any cross contamination was not an option. I tried it a few times and it wasn't worth the risk. I don't feel as if I am playing Russian Roulette with my health by eating out occasionally at this point. I am symptomatic, and if I get a reaction, I definitely know it. My digestion is now working well enough that I only take enzymes if I am in a situation where I think I may get cross contamination. Rare, but I have been glutened by packaged products that were once safe, but changed without notice. At these times, without enzymes, I got pretty sick.
I think the question, "Are enzymes safe for celiacs?" has to be answered by each person on an individual basis. I feel that my gut has healed about as much as it ever will and if the enzymes keep me from having a reaction to accidental cross contamination and they stop ANY amount of damage, I am doing myself more good than harm. That's me. You have to decide what is best for you. Listen to your body. It will tell you a lot if you listen to it!
To everyone on the board:
We are all here because we have a common disease. We are all seeking the same destination, even though we may be taking different paths. Hopefully, we will all get well and stay well by staying as gluten free as possible. I know this is a bit off topic, but I believe it is extremely important. I urge all of you to consider the source of the packaged products you are consuming. Write, email or phone manufacturers as to whether their products may be safe or contaminated. They will answer you and they will tell you the truth. I know this for a fact. I got sick from many products that I assumed were gluten free because the label did not state there was risk of cross contamination. I started contacting the manufacturers before I bought their products. You can find a lot of information on forums about manufacturers, but a lot of what you find will be old posts. Manufacturing processes change frequently, so going direct to the manufacturer will give you the most up to date information. If you can stay gluten free and your digestion is working well, you probably won't need enzymes.
I wonder though? When U of Chicago says Glutenese has absolutely no merit , it makes me wonder HOW they tested it. Were they trying to neutralize the gluten in a whole slice of bread with a couple of capsules of Glutenease? I'm trying to see a ratio of gluten to enzyme. My interest in any product of this type isn't to be able to eat a slice of bread or a doughnut or whatever. I have no desire to eat ANY gluten, but through cross contamination, it may only take a few molecules of gluten to cause a reaction. Does anyone know for sure that DPP-IV enzymes don't have enough strength to break an extremely small amount that could be accidentally ingested due to cross contamination? Did they test the enzymes on that small of a ratio? This is probably not a question that can not be answered, but it makes me wonder if they tested it with cross contamination in mind or were they testing to see if it would allow a person to purpously eat gluten.
I have read this thread from beginning to end three times over the last two weeks. It takes a long time to read the whole thread, but I think it is worth taking the time and making decisions based on personal experiences and scientific evidence.
I can see that for someone who has recently gone on a gluten free diet that it would be very confusing going back and forth between the pros and cons of using enzymes. I know that when I went gluten free over five years ago that I felt like that I could never live a gluten free life. After eating gluten for 52 years, it was a real shocker that I couldn't go through the drive in window and grab a hamburger and fries and eat it on the run and go on with my busy day. I drove down fast food row and looked at each restaurant I had eaten at many times and thought about what was on the menu. I drove past them all, knowing that there wasn't anywhere I could eat safely. I was totally scared! What COULD I eat? At the time, because of malabsorption, my blood sugar would drop if I didn't eat within a certain time frame. I was getting to that point, and beginning to feel weak and panicky. I drove to a grocery store. Pretty much the same story as the fast food restaurants. If I was going to eat, I was going to buy some raw unprocessed food and go home and cook it. I did. That was the beginning.
I became paranoid about gluten. This seems silly now, but I wouldn't even walk through the bakery section of a grocery store. I wasn't sure if possibly some gluten could be present in the vapors that were carrying the aroma of the freshly baked goods in the air. I do now walk through the bakery now to get to the gluten free foods section.
I looked on the internet for a magic pill that would allow me to eat gluten and be normal. There was research going on and some very positive reports of a pill that was being tested at the time. I was very hopeful that it would work and soon be available.
It didn't take long before I felt quite a bit better. In fact, I felt so much better that I decided, regardless of what medication came out in the future, I would never intentionally eat gluten again, and I haven't. I haven't even been tempted to.
As time went on, my wife came to the realization that GI/celiac disease was not a temporary illness. She saw how much better I felt and how my attitude and energy level had improved. She began to make larger portions of food in the evening so I would have a lunch I could heat up instead of cooking a whole meal from scratch every day. Sometimes, I felt that my disease was harder on her than it was on me. To protect myself, at times that she ate glutenous foods, I had to refuse to kiss her before she cleaned her mouth. I was nice about it, but she told me that it made her feel like she had a disease. I tried to assure her otherwise, and she eventually got used to it.
The longer I was gluten free, the more sensitive I became to cross contamination. Packaged or canned foods that had never bothered me in the past were giving me reactions. When this happened, I got sicker than ever. Usually three days of digestive sickness and a few more days of just feeling exhausted. I did a lot of internet research, emailing and phone calls to manufacturers to find safe products.
Every time I tried eating dinner in a restaurant, I got sick, even though I only ate a steak with plain salt, a baked potato and salad with no croutons. After a few tries, I refused to eat anywhere but home.
Even though I was getting better every day, I still felt like my digestion was sluggish, and most certified non gluten grains, seeds, nuts, fungus and nightshades made me feel symptoms similar to gluten. I avoided them as much as possible, but it's hard (boring) to live on rice, a few meats and vegetables. This is how I got started on enzymes. I talked to a naturopath. He showed me some enzymes. They weren't Glutenease, but were made by Enzymedica. He told me they would help my digestion and "POSSIBLY" offer some protection if I was gluten challenged from eating in a restaurant. I eventually ended up taking half doses of two enzyme blends with each meal. One was to aid digestion and the other one was aimed at stopping acid reflux, even though it had some digestive enzymes in it as well. I was very leery about an enzyme helping with cross contamination issues. I was still avoiding restaurant meals.
The enzymes did help my digestion and helped with the terrible acid reflux as well. The lack of gluten in my diet and the enzymes had me feeling better. After having a stomach ache and bowel problems most of my life, it was a nice feeling. As my gut healed, the spacey, light headedness, aches and pains and flu like feelings had gone away as well.
Eventually, knowing it was harder on my wife to never go out to dinner than it was on me, since she has no problem eating gluten, one night, I said, "Let's go out to dinner." She asked me if I was sure, and I said I was willing to try it. I had a long talk with the waitress about what I could and couldn't eat, and doubled up on my enzymes. Did the enzymes offer me 100% protection? Probably not, but I didn't get sick for three days. I didn't get sick at all, but I did get a little bit of gas from eating non gas forming foods. Gas to me is the first sign of gluten reaction. In a restaurant or a home where others eat gluten, the risk of getting cross contamination is pretty high. I admit that enzymes aren't a miracle cure, but offer enough protection (for me anyway) that if there was any reaction, it was very slight. Quoting Rachel here, "Less reaction=less damage." I have to agree with that. Even after all of these years, if I get a full blown reaction from gluten, which is extremely rare, I get very sick and have no doubt that my intestines were damaged by the auto immune response.
I am doing what I can to protect myself, which is a lot more than people I personally know are doing. As I talk to them, I find that they are eating processed foods I would never think of eating due to the reactions I have had. Some of them cheat. I tell them of my research and findings. They have done no research, and are getting glutened often. When I ask what they ate, often it is something I know from experience or research is known to contain gluten. McDonalds french fries for example. I know a man who has been "supposedly" gluten free for 14 years, but eats french fries from McDonalds. McDonalds has a website that lists every ingredient in every product they sell. There is a beef flavoring on their fries that contains wheat. He has recently quit eating them, but for years he would tell me how he only ate french fries and salad at McDonalds and got sick.
I believe these forums are good for the people who are concerned about their health. Yes, we may agree to disagree. Some of the arguments get pretty hot at times. We say the same things over and over again and continue to argue about the same topic, but it seems that with each argument, we all may be learning something new. Some of us remain curious and new arguments entice us to do more research.
I want to protect my health, but I can not live in a bubble. I am going to go enjoy a meal in a restaurant from time to time. I try to frequent restaurants where I have already interrogated the employees about the food ingredients and methods of preparation. Most menus have two or three items I can eat. It's pretty much the same in all restaurants, so eating out isn't as enjoyable as it could be, but we all need a break from routine sometimes, and I think my wife deserves a break from cooking. I can't deny her that pleasure.
I don't normally take Glutenease, because I like the combination of the two enzyme formulations I use better. I have a bottle of Glutenease and it saved me from a major accidental glutening once. I ate enough gluten pasta that was mixed in with rice pilaf to have been sick for a week. I took four Glutenease and had only minor symptoms. One reason I don't take Glutenease all of the time is that it makes my food digest so quickly that I wake up early in the morning starving. I do carry some with me, just in case I get fooled again by hidden gluten and find out before a reaction begins. Once the reaction starts, the damage has been done and taking any enzyme isn't going to do much good, if any.
One of the arguements about Glutenease that keeps going around is that they state, "Glutenease is not formulated to prevent celiac symptoms." I agree. It doesn't say celiacs can't take Glutenease and benefit from it. Whether a person who has celiac disease is symptomatic or asymptomatic, they already have the symptoms and abstaining from gluten and a long healing process is the only thing that is going to make the symptoms to go away. My interpretation of this statement doesn't tell me that someone who has celiac disease can't use Glutenease or another enzyme product to aid digestion and lessen the symptoms and damage that accidental cross contamination can cause. The symptoms of an accidental glutening is only adding to the symptoms of the celiac disease that are already present. So, even with a celiac, better digestion and protection from ACCIDENTAL gluten consumption should not cause them any problems.
I think a lot of the members here agree that enzymes can be helpful regardless of the brand. The main complaint seems to be the wording about the benefits of Glutenease.
Many companies hire an outside company or have a separate department that does their marketing. Marketing's job is to make people want to buy the product. If it is the case that the marketing department is not wording the literature properly, it looks like the company is putting out deceptive information. As they are an agent or employee of the manufacturer, then yes, the manufacturer has indeed allowed this to be printed, regardless of whether they ever really examined what the marketing people are saying or not.
I have called technical support and asked about wording that was printed on a brochure about how something I sell (paint and flooring) should be used. I have been told, "Oh, that's marketing", and then they tell me that they would not recommend using the product in that way.
The marketing of any product should be examined and approved by the manufacturer before the information is released. Especially if it has to do with our health.
If Enzymedica has allowed their marketing people to say things that could be misleading, I agree that this wording should be changed. The product was recommended to me by an herbalist who told me the proper use of the product and made no claims that the product could allow me to eat gluten.
I live a gluten free life and only take enzymes to aid digestion and possibly help to avoid the symptoms of cross contamination.
I feel very well in comparison to my gluten eating days, but I can't say that I will ever be 100%. I know I need to quit smoking. Even though they are light and all natural, cigarettes aren't good for the stomach. It was a lot easier to give up gluten.
Scott, in various posts, I have stated over and over that I never eat any gluten intentionally and that I take enzymes as a protective measure when I eat in a restaurant. I know you are a busy guy and to read all of the posts in all of the threads would be a full time job in itself, but there is a lot of information about myself included in my posts. I just recently replied to aprilh and gave a fairly detailed account of my history from the time I began to get really sick at around 51 years old. aprilh gave an almost word for word replay of on of my previous posts. I hope you will read her post and my reply. I'm not a speedy typist and I didn't want to type it out twice. I didn't mention in that post that besides having stomach aches since early childhood that I went through a series of scratch tests at around age 6. These were for seasonal allergies to pollen and mold, but they also tested me because I was breaking out in hives. The results on the hives testing confirmed that I was allergic to citrus fruits. I think grapefruit was the offending citrus fruit that caused the hives. I no longer get hives from any foods I eat, but oranges give me a terrible cramping in the lower intestine. Bananas make my throat itch and swell. Tomatoes make my lips get blisters. I won't eat an orange or drink orange juice or eat bananas, but occasionally eat a few slices of tomatoes. The scratch tests confirmed that I am allergic practically to every type of plant on the planet. I am also allergic to most animal hair as well as feathers.
After the testing, I began taking weekly injections that were supposed to cure my seasonal allergies. I was too young to be specific as to what they were injecting into me. As I remember, each series of serum got one step stronger. Somewhere into the 3rd or 4th series of injections, I had an allergic reaction. My arm swelled up as big as a hardball. I quit having the injections. They didn't seem to do any good anyway. I still suffer from seasonal allergies. Not the snotty nose kind like when I was a kid, but I still get the itchy eyes, stuffy nose and asthma symptoms. It also taxes my adrenal glands and sometimes I feel like my muscles have gone on vacation and I have no energy. The only thing that ever worked for my seasonal allergies was Seldane, but it was taken off the market years ago. I have taken them all from Allerest to Allegra. I also took Fedrazil and Sudafed in the 70's. All of these medications either made me feel spaced out or did nothing for my symptoms. Living on the Oregon coast, there is a lot of mold spores in the air. When I get away from here, I feel much better. I would like to move somewhere else, but with home, family and business, I have too many roots here to move away right now.
When I graduated from high school in 1969, I was 5'10" and weighed 129 lbs. I ate like a horse and looked anorexic. I was having a lot of stomach problems then. Cramping, fatigue a lot of gas and gas pressure that pushed up into my chest. I thought I was going to have a heart attack at times. I believe I had some pretty serious gut problems then. BTW, my EKG shows my heart to be extremely healthy.
In my early 20's, I would get up in the morning and eat breakfast and shortly after, I would vomit. I had upper GI testing done. Diagnosis was a haital hernia which I don't deny that I probably have, but it was not the cause of my vomiting. I was given a script for a time released pill they called "spans". It worked and I felt better for a while, but I had complaints of constant fatigue. The doctor said it was stress related caused by my job. Being the manager of a high volume restaurant at the age of 21 could have been the cause, but it didn't go away when I left the job.
Three years ago I had a bad reaction to antibiotics. It gave me extreme anxieties and caused some memory problems as well. I have recovered from it, but it took a long time to completely shake off the effects. I have some thoughts on why I was affected that way, but won't go into that at this time.
I could go on and on, but now you will know most of my history if you also read my reply to aprilh.
Regarding the AT-1001 conversation, I wasn't comparing it to Glutenease in any way. The only point I was trying to make out of the whole conversation was that one article which (I usually bookmark important articles, but I didn't that time) I still haven't found, but I will look for again when I have more time. Anyway, the point I was trying to make was the comments from the people who read the article. They had the impression that they would be able to take a pill and head for the nearest fast food joint.
You have a very good memory. I couldn't have said it better myself.
After being ill for 51 years and diagnosed with the wrong problems too many times, I met an herbalist who has more knowledge in his little finger than most of us have in our whole brain about how nutrition affects the human body. I told him I was having a lot of cramping in the intestines on the lower left side. He suggested several things that might help. I first used ashwadhanda. It worked well for a while. I tried St. John's Wort. Again this helped. I also had some issues with anxiety, so it helped with that too. I added a supplement of calcium, potassium and magnesium. This helped too, but I was still having issues. As we got to know each other better, and I felt more relaxed about talking about my symptoms, I told him I had a lot of "D" and sweated profusely day and night. I felt exhausted, spacey, my eyes were extremely sensitive to light and I often wished there would be just one time when I wasn't aware day and night that I had intestines. There was always some negative feeling there unless I pickled them with alcohol. The problem with that was that when I did, I felt even worse the next day. I told Mark (the herbalist) that even though the herbs and supplements I was taking were helping, that I still didn't feel well. Without any hesitation, he said, "Jack, you need to live a wheat free live." We talked a little bit and I agreed that I would try it. I didn't! My thought was that maybe Mark wasn't as knowledgeable as I had thought. How could wheat affect me? I had been eating it all of my life. I was denial as many people are when they are told they can no longer eat wheat. About 6 months later, I was getting so sick that I knew I had to do something or I was going to die. I cut out wheat for one week. I felt so good that even though after spending every night that week researching the disease and knowing that being gluten free is a lifelong commitment, I ate some wheat. I got so sick that I swore I would never intentionally eat wheat again, even if someday there would be a pill to cure the disease.
Even though I felt better, my digestion was slow and sluggish. I talked to Mark about that. He suggested papaya enzymes. I told him that I was unable to take the papaya enzymes that had helped me in the past because of the sorbitol in them. He showed me the "type" of enzymes that we have been discussing in this thread. Not the same one, but one that was more aimed toward general digestion. He said they would aid digestion and said that they "may" offer some protection if I was gluten challenged while eating in a restaurant. He made no specific claims that they were designed so a gluten intolerant person could freely eat gluten. I remembered what he had said but wasn't eating out at all at that time. Eventually, after eliminating gluten and any store bought products that had caused reactions because of cross contamination, I started feeling a lot better. I was healing. It didn't happen in six months as I had read. It was like it as if my progress could be measured in half lives. It took a long time to heal and there were a lot of foods I just couldn't eat. Mainly nightshades, dried beans, corn and corn sugars, fungus of any type, including antibiotics, many non gluten grains, even though certified gluten free, broccoli, nuts and dairy. One day, I felt good enough to suggest we try eating in a restaurant. I knew both cooks at a local restaurant and talked with both of them about my condition. They always washed their hands and used clean tongs to handle my food. I didn't get sick. Thanks Cindy and Dan! By this time, I had quit taking the enzymes unless I ate something that was hard to digest. I did fine without them at "that" restaurant.
We went on vacation and carried a camp stove to cook lunch, but I decided I could eat dinner safely in a restaurant. The first night of vacation, I ordered prime rib, not thinking that they heat it in aus jus that usually has some packaged mix added to the natural beef juices from the roast. This mix usually contains a small amount of wheat. I got very sick! It lasted about three days. It was sad to get that sick on the first day of vacation, but I thought, "Hey, I used to feel like this every day!" That is when I started carrying some enzymes with me for that possible added protection from cross contamination that Mark had casually mentioned. I have not suffered any major symptoms of cross contamination since I started taking them with meals in restaurants. I do at times feel a little something when taking the enzymes with a meal in a restaurant. I am sure that at those times that I got some cross contamination, "some" damage did occur, but not the major destructive damage that would have occurred without them.
A lot of the members here have had blood tests and or biopsies. I have been to two different GP's for unrelated reasons since I went gluten free. They have both told me that they could refer me to a specialist for testing, but if being gluten free has made me feel better, that they see no need for tests. So, yes, I am basically self diagnosed with the help of Mark and many hours of searching the internet.
I agree with you about leaving the board. Most people would. Even though I don't feel welcomed here by everyone, I do feel I have some friends here. Maybe I'm just stubborn. I have worked with the public for 39 years in retail businesses. My wife and I have soley owned and operated a business for over 14 years. Just for the record, we sell paint and floor coverings, no herbs or supplements. We have encountered many people over the years who have been unhappy with past experiences with other business that they dealt with at some time that they start out with a bad or mistrusting attitude when they walk through out door. For the majority of these people, we gain their trust and make a sale. Many of them are so thrilled that they are treated right and are happy with the products and services we provide that they become our best advertising and it's free! Mistrust walks into our store on a daily basis and walks out smiling. I'm used to proving myself.
Thanks for your kind words. See, you are one of the reasons I have stayed here.