Get email alerts Get E-mail Alerts Sponsor: Sponsor:

Ads by Google:

   Get email alerts  Subscribe to FREE email alerts

  • Announcements

    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 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 Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


Advanced Members
  • Content count

  • Joined

  • Last visited

Community Reputation

1 Neutral

1 Follower

About EJR

  • Rank
    Community Member

Contact Methods

  • Website URL http://
  • ICQ 0

Profile Information

  • Gender Female
  1. Red Heads

    Another redhead here. My grandparents were from Norway so have the fair skin, freckles, etc.
  2. The Butterball turkey may be the culprit. I looked on their website and the turkey has 'modified food starch' injected as well as other ingredients. Modified food starch may contain gluten.
  3. I am allergic to soy (skin-prick test at allergists). My first symptom was a burning and stinging sensation and slightly swollen lips and tip of my tongue when drinking soy milk. I am presently gluten, soy, dairy, and egg free.
  4. Thank you for this information, Mushroom. It describes very well what I also experience. I have had SVT's (supraventricular tachycardia) since I was 13 years old (now 65). I have also experienced the exact frustration you speak of with doctors (the gastros and the heart specialists). Just last night I had the problem when I went to bed so I got up and sat in my easy chair and watched TV until 2 a.m. Everytime I would lie down I would get heart palpitations. I had a lot of upper gas (also have a hiatal hernia so I suppose this doesn't help either). A friend who has heart palpitations also has the same problem.
  5. Hello EJR, Ive been reading an old post about the abdominal pain you were experiencing at night time.

    My daughter has recently been diagnosed as Celiac and is suffering with the same pain at night. Did you ever find out how to control this? She is already on the diet and was ok for a few months but recently had a stomach bug and is up every night again.

    Any advice you can give please?

  6. Chia Seed

    I've been eating them for about two months. I have found that they help keep me 'regular'. They have the benefits of psyllium without the harshness. I heard about them from a lady who has colon cancer and has had a good portion of her bowel removed. She was unable to have regular bowel movements until she started taking chia seeds on a daily basis (2 tbls. of chia soaked in a cup of water overnight). She eats the gel every morning. I have also found that the gel is a great egg replacer when baking. I make a 'chocolate macaroon' cookie using the chia gel instead of meringue. Also I made teff pancakes using the chia gel instead of eggs and they are great! Anything I bake is gluten/dairy/soy/egg free so can be a bit of a challenge. Joyce
  7. Yes, I have had shingles twice now. The first time when I was about 40 years old. And then I had a very bad outbreak last February (I am now 64). They were on my lower back (buttocks area) and wrapped around into my abdominal/pelvic area. I was diagnosed with gluten intolerance by Enterolab and a specialist where I live agrees with the diagnose due to positive response to the gluten free diet. The shingles occurred about a month after eating a lot of gluten as a trial around Christmas time. Is there a connection....I'm not sure? My liver enzymes were also elevated at the time. I'm still having some post-herpetic pain from the last shingles outbreak. Joyce
  8. Hi All, I am 64 years old and have suffered increasing food intolerances for the last 7 years. It all seemed to start after taking Ciprofloxacin and developing a rectal yeast infection that lasted for over a year. Eggs were the first to go and then dairy. Both produced rapid explosive diarrhea and gas. My gall bladder was removed 3 years ago and then the diarrhea and digestive problems became overwhelming. I lost 50 pounds (that I couldn't afford to lose and began to wonder if I would even live to see my 65th birthday). The biopsy done just prior to the gall bladder surgery was negative for celiac disease. Eventually I did have the Enterolab testing done and antibodies to gluten were found in my stool test. Also I carry one of the main celiac genes. I started a gluten free diet but made many cross-contamination mistakes and also would give-up after 3 or 4 months and try toast, etc again. I wasn't seeing any improvement. Well, the good news is that in December of this year after really gluttening myself over the Christmas holidays I decided to go back on the diet and to stick to it religiously. And finally the improvements started to happen. I no longer have diarrhea, the constant bowel pain has lessened greatly and the variety of foods that I can tolerate has greatly improved. I have now gained 12 pounds and know without a 'shadow of a doubt' that I have done the right thing. I did see an Internal Medicine specialist last month and she said that in her opinion "a positive response to the diet is much more important than any testing that doctors can do". She indicated that the tests have many false negatives. She thought that my age contributed to my slow response to the diet but she did say that she always tells her patients that if they want to try a gluten-free diet they must stick to it religiously for AT LEAST six months. She counsels them not to necessarily expect immediate improvements. Just thought that you might find my experience helpful. Joyce
  9. Sorry I didn't quite get the dates right regarding weight loss. Nov. 07 to Jan 09 lost 50 lbs. Holding at 117-119 since Feb. 09.
  10. Hi Gemini, The description you used for my doctor seems to fit quite nicely. But perhaps she is correct, I'm not 100% sure. I would suspect some other auto-immune disorder or liver disorder (I have 4 cysts on my liver which they say are not something to worry about). Getting to see particular specialists here in the land of 'socialized medicine' is not very easy. You first have to convince your GP (the moron) to give you a referral. And yes, I have had a dramatic weight loss. I went from 168 lbs. in Nov. 07 to 118 lbs. Nov.09. Since then I have held at 117-119 lbs. I am 5'7" tall so this is quite thin. But as I mentioned I did have gall bladder surgery (Dec.07) and have not felt well since....great difficulty eating....many, many food intolerances including wheat. Also had major problems with diarrhea for almost 2 years. I feel this is the reason for the weight loss. If I am able to eat a bit more I do start to gain weight so to me this doesn't look like weight loss associated with cancer but rather with a very disturbed digestive system and possible Celiac disease. Regarding the colonoscopy (Jan 09), the previous surgeon stopped half-way through the procedure because he was unable to keep me sedated (my vital signs were too low to give more sedation). So half of my bowel is still suspect I suppose. I am going to ask for a referral to an Internal Medicine Specialist here that has done extensive work in auto-immune diseases and skin disorders. I also have vitiligo and saw here about 5 years ago when that started. My appointment letter for the General Surgeon / ColoRectal Specialist arrived. I have an appointment April 26th. I guess I will go but am not agreeing to any procedures without giving it a lot of thought. Thank you so much for caring and taking the time to reply to me. It is very much appreciated. Joyce
  11. Hi Ravenwoodglass, Thank you so much for you kind and understanding reply. I'm really not too worried about the Big C. I have been ill since Dec. 2007 when I had my gall bladder removed. This is when all of my serious digestive problems and weight loss started. Right now I'm just trying to deal with the shingles pain and the constant gut/bowel pain that I have had for 2 years or more now. I think I have worried so much already that now I have moved on to the acceptance phase. I just try to cope on a day to day basis and enjoy the small things in life. Regarding the Celiac panel, in Dec 2007 I had an endoscopy and biopsy for celiac. It was negative but I had been gluten free prior to the endoscopy for a month. The biopsy did show chronic gastritis and intestinal metaplasia in the antrum. I did not have the celiac bloodwork done at the time. In Sept. 09 I had the genetic and stool testing done by Enterolab. I had been gluten free since Dec. 07 (although I did re-introduce gluten briefly 3 or 4 times during this time period). The tests showed elevated Fecal Anti-gliadin IgA; Anti-tissue Transglutaminase IgA was negative. I haven't eaten dairy since 2005. I tested IgE allergic to soy in February of this year. The shingles pain is ramping up today. I finished the anti-virals yesterday. From reading on the internet the only tie-in between shingles and cancer is with Hodgkin's and non-Hodgkin's lymphoma (50% greater chance of shingles). I have no other signs of these. But apparently any condition that depresses your immune system can lead to a break-out in shingles so I suppose the possibility is there. Thank you again for taking the time to reply to my rather confusing query. Joyce
  12. Just last week I broke out in a rash. It starts at my spine (waist level) and goes at an angle down my buttocks and wraps around into my lower abdominal area. All of this is on the left hand side of my body. Two doctors have confirmed that it is shingles. Apparently because of the location it could be increasing my normal left-sided abdominal/rectal pain. Has anyone else experienced this? Today I finished a one week course of an anti-viral (Valacyclovir). It seems to have helped reduce the redness and spread of the rash but the pain is not nice. Bowel movements are very painful. I have been having some problem with this previously but seems even worse now. I have been gluten, dairy, soy, and egg free for over a year. I am still having a lot of symptoms but this may be because I am older (63). I have had mildly elevated liver enzymes for about 4 months now. This may also have been caused by the shingles. I do not have an official Celiac diagnosis but have positive results from Enterolab (IgA and DQ8). Would really appreciate hearing from anyone who has experienced shingles in association with Celiac / gluten intolerance. My doctor of course scared me by saying that because my liver enzymes are elevated and I have developed shingles that these are both signs of malignancy somewhere in the body. My understanding is that gluten intolerance can also be responsible for a depressed immune system and for elevated liver enzymes. My doctor is sending me to a colo-rectal surgeon for possible repeat colonoscopy and who knows what else. In our medical care system this probably won't happen for months yet. Joyce
  13. Hi David, I just read your other posts as well. Have you considered that carrageenan which is found in many foods including ice cream may be causing your GI symptoms? I was drinking almond milk everyday and had one heck of a time before figuring out that the carrageenan in the almond milk was the culprit. There is quite a bit of information available on carrageenan (also known as agar). Just an idea. It took me over 4 months to figure out what was making me so sick. This happened about 3 years ago. During that time I had all kinds of tests and ended up getting my gall bladder out. Not sure it was really necessary. Unfortunately my GI system has been even worse since the surgery. I'm not a 'gold-standard' biopsy diagnosed celiac but have positive results from Enterolab and also from genetic testing. I have been on and off (for brief periods only) the gluten free diet for about 1 1/2 years now. Obviously I'm still not better. It is very distressing not to have a firm diagnosis because for me at least it has made it difficult to stick with the diet. I tried gluten again about a month and a half ago and all I can say is that I felt even worse so I am back to gluten free again. Please do check out the information available on carrageenan. I'm sure the ice cream you mentioned in a previous post would have it. Hope you are able to resolve your GI symptoms. It seems sometimes that all we can do is to keep trying. Joyce
  14. Blood And Biopsy Results

    Hi Jason, I have been following and reading your posts for the last few months. Your problems with food sound very similar to my own. My biopsy was negative (after being gluten free for 1 month). My stool analysis at Enterolab showed elevated anti-gliadin. I am also DQ8 .... I remember that this is the same for you as well. I also believe that antibiotics started my gut problems and gall bladder surgery made them even worse. Eating gluten makes me feel worse but even off the gluten I am still having major problems. It is very discouraging. You mention that you are going to a Celiac specialist. Did she do the stool test or did you have it done at Enterolab? I am just curious if other doctors are also doing the stool tests now. Thanks, Joyce
  15. Anyway just wanted to say that I was very brave and tried some of the Taro Root tonight. I just boiled it for about 45 minutes (had already cut it up like a potato). We peeled it first (kind of hard, my husband did it). We both loved it!!! It certainly has a delicious taste! Definitely tastes like nuts to me. I have really been missing nuts as I don't seem to be able to eat them anymore. Thanks for the link re storage and cooking. I have been reading quite a bit on the internet. Was just feeling a bit reluctant to eat this strange food. Apparently it is supposed to be highly digestible and it is definitely very nutritious. Has more calories than potato and more nutrition. Sure hope it agrees with me. I guess I'll know within a few hours. Joyce