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 had both shoulders repaired in the past 2 years. Right side was the superaspinatus tendon, and the left side had that plus the bicepts tendon. I had the left one done on 4/5/06 and the right one in Feburary 2004. Has anyone seen or have any information about the effect of celiac disease on tendons? As my personal information shows, I have had symptoms almost all my life and I am almost 60 years old.
Thanks for any response.
Your symptoms are correct for c/d--d/h. If you have d/h you DO have c/d. The d/h coverage area for me was generally the same as you outlined. It is hard to hear and accept that one has a disease like c/d and d/h. I was big time angry. But after the gluten-free diet and the improvement it made in my over all health, I am now seeing it as a blessing, and thank God for helping me to find out what has caused me so many problems over the last 58 years. I can now actually start thinking that I may actually make it to my 80s.
Some times the tests are not conclusive. I had some positive and one skin biopsy that was none conclusive. ( that was in the middle 80's) But my symptoms worsened until October 2005 when I finally went gluten-free again and this time with better information. Now everything is better. Go with what your gut tells you, and thank God for helping you to find the problem.
I can understand your doctor situation, because my dad was in the Air Force until I was 11 years old. I went to the hospital on the Tinker Air Force base which at that time was a very good hospital, but my mother had to arch her neck a few times to get the care we needed.
If your doctor will listen to you and help you with the tests you want, in some ways, that is worth more then her having a lot of knowledge about the disease. That is kind of where my doctor is.
I don't know why cholesterol is low in some celiacs and high in others. I wonder if it has to do with how advanced the disease is in the person as well as how much cholesterol they make normally. Mine has historically been at around 165, but last summer I was down to 100.
I have seen a rather large amount of new research of old research studies where they look at the long term effects of LOW cholesterol on the health and life expectancy of the study subjects. It is very interesting that as cholesterol levels go below 160, the incidents of depression, suicide, anxiety, violent behavior, sudden death, and stroke actually goes UP, and in people over 50 heart attacks go up as well. They also find that the LDL is not a damaging as thought. If you type in "dangers of low cholesterol" on the Google search engine, you will find a lot of interesting information.
I have an 8 page paper that a doctor I know put together. He is an MD that is researching the natural and none invasive methods. If you would like a copy, contact me by private message and give me your fax or email and I will get it to you. It is most informative and interesting.
Richard's experience is very much like mine. I took dapsone for 20 years+- 1 or 2 and it did wonders for my D/H. In the mid 80's most dermatologists did not know about C/D. I had the one of the best in Oklahoma City. He knew I had D/H by visual inspection, but it was backed up by lab tests. I also was dieing of malnutrition last summer. I have had symptoms of C/D for 58 years, but no one knew what they meant. As was stated, if you have D/H you DO have celiac. I/we tell you this so you can avoid what we have had to go through. Things like pernicious anemia, chronic diarrhea, depleted red blood cells, regular anemia, liver function problems(dapsone induced) impotence(Men only), weight loss, low cholesterol that induced depression and anxiety and the list goes on.
Please listen to those who have been years on this road. Even though Dapsone is a great way to control outbreaks, (I still have to use 25 mg. a day, down from 50 mg a day). I am going to stop that when I am able to do so. I have been gluten-free for 6 months and have had big improvement in my blood count.
Please read up on dapsone at www.webmd.com Or I think that is the correct site. It is not a replacement for a gluten-free diet. Dapsone causes many problems, and exacerbates many of the problems caused by c/d. Had I known then what I know now, I would have stayed on the gluten-free diet in the 80's. But I didn't know and I didn't stay on it, and have paid a price. One price for me that I haven't heard anyone else mention is that I tore the supraspinatus tendon in my right shoulder, better known as a rotator cuff tare. And now am about to have surgery on the left shoulder for a torn biceps tendon. My orthopedist said that c/d is most likely the underling reason they tore.
Please understand that I know some have had less problem then I have. But, please be careful, your health is important, and once lost can be hard to recover.
I have said enough, good luck.
PS. If your doctor really does not know that D/H is CAUSED by celiac disease, I would find a new doctor. Just go to the doctor rant section of this site and read about the abuse doctors have put some through.
I am a 59 year old male, but I found your description of your symptoms and the solution to the problems with eating interesting because I had many of the same symptoms, and I had the same solution, don't eat, and the same results, I felt better but lost about 35#s in 3 months. I also have been diagnosed with pernicious anemia and took WEEKLY B12 shots, for 2 years, with no improvement. I also have had anemia induced by dapsone and c/d.
Now after 6 months on the gluten-free diet, my weight is back to normal, my red count is in normal range and the pernicious anemia is almost gone. That is the red cells are smaller and very close to the correct shape, and this is without the B12 shots since I started the gluten-free diet.
If a doctor will not test you then try the gluten-free diet for a few months to see if it helps, if it does, forget the testing and just do what helps. I cannot pay the cost of the tests and since they are not able to detect the disease is all cases, I chose to do what my common sense led me to do. With the help of this web site and the internet in general one can make some pretty well informed decisions about their health care.
Yes I have had them off an on for years. They seem to get worse when my system is not balanced, which is after being "glutened" or in the summer when sweating a lot and some times it just gets off for reasons I can't identify. I have found that walking and messaging the area and using a product called "Cramp Cream" or with "Absorbine JR" will stop them. When I had a spinal cord tumor about 7 years ago, they got so bad it was unbearable until I discovered that if I put several ceramic magnets around my legs and arms, with the negative poll to the skin it would reduce them by 60 to 90%. I know that that sounds like snake oil, but there is a valid explanation behind it. The short version is that it increases the oxygen level in the tissue in the area of the magnet.
I have also found that my electrolytes are a trigger, when they are off, esp potassium, and sodium. Possibly one of these will help.
I agree with Ursula, I have not been "lab diagnosed" with C/D, but have been confirmed with D/H by positive biopsy and visual check by the top dermatologist in Oklahoma City. That was 18 years ago and I am now 59+ years old with symptoms going back for 58 years. It is not comforting to see all the possibilities of the late diagnosis, but late is better then not. I went gluten-free the first week of October 2005, and the change in my overall condition is just amazing. I have gained 35 #s since then, and have the best blood work in 15 years or more. My stomach problems (In 1983, I had a gastric resection and Billroth II, because of the atrophied duodenum) have cleared up, and I have never been free from that problem since 12 months old. My upper respiratory system congestion is gone, my memory is better, my cholesterol is up to my normal, my D/H is much less then it was allowing me to drop my dapsone to half what I was using. I had been diagnosed with pernicious anemia and that is looking a lot better, enough so that I no longer have to give myself the B12 shots every week (which were not helping the blood cells anyway). And the list could continue on for a while. The long and short of it for me is that I am thankful to know that what made me think that I was not long for this life is something that can be dealt with and that I do feel better. Not to be to personal, but even the impotence is better. That is on of the symptoms of C/D that we don't see much about.
Some do develop REFRACTORY SPRUE which is not thought to be reversible, but I wonderful if even that would respond if given the correct diet and enough time.
I do not know how far my recovery will go, I just do the best I can and thank God for finding out what is wrong.
I to am 59+ yrs old and have had D/H for over 18 years. I tried sulfapyridine and it sorta worked then I went to dapsone and it did work at 50 mg. once a day. But being the nasty drug that it is, it lowered my RBC and basically all the readings related to my red blood cells. After cutting down to 25 mg a day after being gluten-free for about 3 months, my red count is better (the test was at about 3 months gluten-free, but I am now 5 months gluten-free and will have another test in about one month). Your experience with flax seed oil is most interesting and holds out hope for some of us. I am going to try it as soon as I can pick some up. Thanks for letting us know about it.
I had an experience some what like that. When I went gluten-free I had a rapid decrease of some symptoms, but my D/H went crazy for several weeks. I had to increase my dapsone for a while, but now I am down to half the dose I was on before being gluten-free. My anxiety improved by 98% in a few days and stayed that way for about 4 months, then returned with almost the same intensity as before, just not all the time as before. My foggy mind and memory are getting better, but the anxiety is canceling out some of the improvement. I have trouble talking because of it. Some times it feels like my brain is going to short circuit and explode. Has anyone had that type of situation happen to them???
Aside from these things life is better in gluten-free mode. My weight is up (a good thing) and blood work is better then in 15 years. Spelling is not improved though.
I agree with the above posts, but would add that you will have to find out what foods work for you and what ones do not. And that may change from time to time.
I can eat hard cheese, but have to watch pregrated cheese. It has potatoe starch in it and celulose powder (I suspect that some times the celulose powder has some wheat flour in it) . I have had a reaction to some grated cheese at times. I CAN NOT eat yogart, even if I take lactase enzyme with it. I can use butter, cream, full fat icecream but not cottage cheese, milk, low fat icecream or powdered milk in any form. I also CAN NOT eat any thing with added casine. It triggers as strong a reaction as gluten. It sounds strange, but hard cheese is a go and it has casine in it. But I suspect that the bacteria culture that is used to make the cheese in some way modifies the casine so that it acn be more easley digested.
As the others said, I will second, try going WITHOUT dairy and eat NOTHING with dairy in it for several weeks and see what happens. I know for me the effect of the foods that my system don't like for outweighs the pleasure of eating them.
I had a simular thing happen to me, only I did not know I had eaten anything with gluten, after eating at a friends home, (she thought she had made everything gluten-free, but did not know about hidden gluten) I developed a mild GI pain and gas, then the classic for me, an attack diarrhea in which everything in the GI tract turns to water. It lasted for several days, during that time I can control it with lopranimine (SP?) if I take about 6 in the first 2 to 3 hours. Then a few days later as I about to get it under control, I ate at a TACO MAYO and only the SAFE items that their corporate office told me were gluten-free, and with in hours had a worse attack. The moral of this event is, that it does not take much to trigger an attack and it takes a while to get over it. Another thing I have found is that the HIDDEN GLUTEN is in a lot of things that one would not expect to see it in. I now read EVERY label and email the manufacture when in doubt or if I have a question about a product. You might also take note if some of the reactions come after you use dairy products or products with CASINE in them. Most Celiacs are to some degree intollerant of those items untill the gut has a chance to heal. I am also VERY sensitive to MSG in several of it's forms, but not all. That is a study of it's own to find the source and the many different names used to hide the real name (MSG) on labels.
In short, when you think it is not working, dig deeper in to the knowledge base on this site and the other internet sites and you will find information which will help you to know what is happening, or at least to have a better idea of what to try, and above all don't give up.
I am new to the posting side of the site, but thought I would get my feet wet with this topic since it hits close to home for me also. I am 59 years old and have had symptoms of C/D all my life. Mostly digestive and upper respirotory problems, but also some nuerological issues which have never been checked. No doctor ever mentioned a food problem.
My problem with Doctors is more related to the profession as a whole then my doctor himself. Actually I like him, because he will listen to me and work with me to do what I believe is best for me even if he is not convinced of the problem. That may be because I have been correct in 3 major health issues, a spinal tumor, a torn rotator cuff and Celiac disease. The first two I asked for an MRI to find the problem, and the last I found by internet research to find more information about Dermatitusherpetaformas that was clinically diagnosed about 17 years ago.
I did NOT go to my doctor when I was really bad, before I found the problem, because I knew that it mean another RX and that is not what I wanted. When I found the web site from BethIsreal Hospital and the statement that everyone who has DH also has celiac disease, I was very angry, but that quickly turned to resolve to do what I needed to do to get better. I had tried a gluten-free diet 17+ years ago when first diagnosed with DH, but I had 3 small children and it was to hard to get and cook the foods needed and there was not as much information at hand, so opted to use DAPSONE and handle it that way. It worked well to control the DH, but for the 17 years, my blood work continued to get worse untill I had to take B-12 shots for pernicious anemia, and they were not helping. My energy was a memory, I started having the classic Celiac symptoms and still nothing stood out to the doctor. After loosing over 30#s in 2 months, and having a colesterol level of 100, I was able to get my GI symptoms under control with OTC medication, and started eating again. (I had almost stopped eating because of the GI problems) It was about this time that I found the website and started a gluten-free diet. In 3 to 4 days I had a radical improvement, and after two weeks it was really not believable. Then I had a week of return of symptoms, but they went away and improvement started again.
After 2 & !/2 months on the diet I went to my Doctor and took the pages from the web site. He agreed with MY diagnosis and put it in my records, and asked me questions about the disease and gluten and what to watch out for. So he is able to accept an informed view even if not his. I do know that this is rather a rare thing. (I had the best blood work I have had in over 15 years,)
My problem with the medical profession in general is that the drug companies have hijacked the medical training and that is what doctors learn, what drug is good for what, as some one else said in their post. Also that even new graduates from medical training do not consider DH as secondary to celiac disease, so many people are being given DAPSONE to treat DH and their Celiac is undiagnosed, so they just get worse.
If you want progressive health care today, I believe that the only way to get it is to take charge of your own program and find doctors that will play the game with you to restore and maintian your health. The internet is a life line in this area. I have learned more here then in all the medical books and doctors I have seen in my life before now.
I am just thankful to find out that I have "treatable" disease. Hope this is not to far from the intent of the rant. Thanks for this website, it has been a wealth of informative information and a support as I have navigated the first months of the diet. Thanks again.