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


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    About jjb1234

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    1. jjb1234 added a post in a topic Do You Pee A Lot?   

      Yes, I have always had this problem. Good to see other mention intersticial cyctitis as this is what I was thinking too.
      I have had IC most of my life. Some do believe this is also an autoimmune disorder.
      More recently I met with a doc (a neurologist) who said some now believe IC is not it's own condition but probably part of another.
      I believe this for sure!
      My bladder issues often flair up with other symptoms such as sinus inflammation, rectal inflammation, joint pain, fatigue etc.
      I have learned to control my bladder problems the same as I have all my other symptoms which is through diet.
      Since I have been doing the gluten challenge ... I have noticed I am peeing a whole lot more .. having to get up in the middle of the night etc.
      What I think is happening is I am having some bladder inflammation due to what I have been eating.
      Along with my bladder symptoms I am also have left side pain which I think is coming from my colon and joint pain.

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    2. jjb1234 added a post in a topic Nighttime "accidents"   

      I do not have this problem but have known of some that have.
      Some of the time the problem is not just gluten and or dairy but all grains and other types of carbs.
      Have you considered the SCD (specific carb diet)?
      Here is some info:
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    3. jjb1234 added a post in a topic Heel Pain   

      No I don't wear flipflops (anything in between my toes makes me nauseaus) also, I can only tolerate certain types of shoes due to nerve issues.

      No medication at all.
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    4. jjb1234 added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      Heel Pain
      I have noticed since I have been doing the gluten challenge that I have had quite a bit of heel pain when I stand on them.
      It is usually more pronounced when I first stand on them then lessens as I walk around more.

      Anyone else get this?


      • 4 replies
    5. jjb1234 added a post in a topic Intentional Glutening   

      I have searched all of the symptoms other than the GI symptoms.
      And I really wonder ... how many w/ MS, epilepsy, and a number of other conditions are wrongly DXd or not adequately DXd.

      I am so hoping for confirmation of celiac disease ... it would explain so so much. More than what I have already mentioned.


      We'll see I guess.
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    6. jjb1234 added a post in a topic Intentional Glutening   

      I was mostly referring to brain lesions.
      I am just learning about the DH and will ask you more about that later.

      As you know I am just learning more about celiacs ... very interesting to learn of all the symptoms other than gastro.
      But RE ataxia & UBOs, I find it very interesting that it occurs with celiacs, but this combo of symptoms can also occur with other conditions such as epilepsy, chiari malformation (some w/ chiari have other conditions that cause the UBOs I think), multiple sclerosis and so on. And I would think that a UBO itself can sometimes cause ataxia ... I would guess if the lesion was on the cerebellum it could possibly do so.

      But you know, you have really got me thinking about all of the folks I know that do have both ataxia & brain lesions. Some of their DXs include MS, epilepsy chiari etc ... I am really wondering if the etiology for some of these other chronic conditions may possibly be secondary to gluten intolerance.
      I will have to take a closer look later and see.

      Thanks for your input ... very very helpful.

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    7. jjb1234 added a post in a topic Intentional Glutening   

      Saw a PCP yesterday. She is really thinking celiacs as well and offered to do the testing but thought it'd be better to glutenize longer and maybe if consume more.
      I see gastro next week. She said will likely do the test and if neg may suggest glutenizing for another month and retesting.

      RE: ataxia, I just wanted to mention that there are many causes ataxia not just celiacs ( I am hoping though celiacs is the explanation for us)
      Same with lesions ... many causes for this as well. It is always good though to try and get to the bottom of those lesions whatever the cause.

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    8. jjb1234 added a post in a topic Intentional Glutening   

      I am also curious about your ataxia. What did it look like exactly?
      We both ( my dd & myself) have this.
      My DD more often than I do, but I think I have always had this intermittently.
      We are currently seeing a mito doc for possible mito.
      We also have a pos DX of aut neuropathy.
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    9. jjb1234 added a post in a topic Intentional Glutening   

      When you had the more intense D, was it very watery? Mine usually is loose, but formed and pasty ... that sticky stuff.
      Also, did you have the lower left pain with yours? The pain is most intense with the BM and the BM lasts much longer than usual. About 10 to 20 minutes.
      The more intense pain lessens once I am done but will linger for a while. Today the burning part of the pain is still here ... two hours later in the lower left but going upward.

      I'd much rather not do all this. I know what my body wants right now ... a few days of just brown rice and veggies!
      I have so many projects I need to work on and everything has been put on hold .. partly due to me not feeling so great.

      I am anxious to get tested though as a positive result could possibly lead me to more answers about my daughters issues.
      She has had symptoms as well though hers more serious ... stroke, epilepsy etc.
      When she was an infant, she did not grow well at all and always had GI stuff. Painful bowel movements, very large frothy pale stools (was tested for cyctic fibrosis), very irritable etc.
      She went on a medical diet for seizure control (LGIT ... mod ketogenic). We eliminated grain products.
      The diet helped her a great deal. Beside seizure control, she gained some much needed wt and went to the 50th percentile and has stayed there.
      I cannot though ever put her back on gluten simply to be tested ... no way!
      But it seems as though no one will take the possibility of celiacs seriously without a positive result.

      Also, in my family there are tons of illnesses that can be linked to celiacs (thyroid issues, cancers, epilepsy etc)
      They too though would not take celiacs seriously unless someone else has a pos result I think.

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    10. jjb1234 added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      Intentional Glutening
      I posted a month or so ago I have been noticing more consistent reactions to eating gluten.
      Over the past 4 years I have not been eating much gluten as my daughter is on a medical diet and she does not get any gluten or grain products.
      Well this past summer I had noticed that any time I did eat certain grain products (bread etc)I would have intense symptoms the next day that felt like food poison (very painful cramping and burning in the lower left, loose stools, nausea etc).
      I scheduled an appt with gastroenterologist which will be next Friday.
      Since I have decided I want to be tested for celiacs, I have been intentionally eating gluten products a few times a week.
      I feel terrible. Consistent joint pain, fatigue, brain fog and near constant GI upset.
      The thing is, since I am eating MORE gluten now, I have not been having many of those more intense and consistent feelings that feel like food poison.
      I did this morning though which brings me to the forum today.

      So some symptoms have gotten more consistent, but the more painful intense symptoms are not as frequent.

      Any thoughts on this?


      • 12 replies
    11. jjb1234 added a post in a topic Glutenizing Myself Before Testing   

      I certainly could understand the reasons for not getting a concrete DX .. and also understand not challenging the system.
      If it were only about me, I would just be gluten-free and not need a DX, but it is about more than me.
      Particularly trying to get to the root of some of my childs issues.
      Also, I come from a rather large family. There is a lot of cancer, epilepsy, fibro, chronic pain issues etc.
      I know of many of the issues that occur with celiacs ... if I can somehow tie it all together, it might be helpful to many.

      I am also looking to see (hoping really) that celiacs may be the root of my own preg problems which are on the severe side.
      To the point I thought I would never be able to get preg again.
      I would be elated if there is celiacs was the problem and I may be able ot have a successful preg by avoiding gluten.


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    12. jjb1234 added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      Glutenizing Myself Before Testing
      I will not be seeing a GI until Sept.
      I understand you don't want to be gluten free before the test and you should glutenize for a certain amount of time.

      I have a lot to do though of the next few weeks that will require both strength and concentration so I cannot gluten myself during this time which leaves me only a few weeks.

      Is three weeks of eating gluten enough to produce an accurate blood test result?
      If I am quite symptomatic, will that be an indicator at all that I may have accurate results?


      • 4 replies
    13. jjb1234 added a post in a topic How Long To Symptoms Last If ...   

      I have lots of questions for you.

      1.Do you have any info specific to what occurs with a gluten reaction when it causes neuro and/or joint pain?

      2. What do you mean by gluten related cancer? I have many in my family that have or have had cancer and in my mind I know there is a good chance it is more rooted in some sort of immune related response.

      3. Nerve damage, what type of nerve damage specifically and why? We have this too. It causes autonomic neuropathy.

      4. Ataxia, I have this, my daughter has this. Any info as to exactly why this occurs?

      5. Did you eventually have positive blood test or biopsy results, if yes, has anyone explained why all of the neg results?

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    14. jjb1234 added a post in a topic How Long To Symptoms Last If ...   

      Thanks. I have the same question, do you become symptomatic even with just trace amounts of gluten?
      Also, can you tell me more about the joint pain. I have had this problem all of my adult life. I do have a connective tissue disorder and hx of lyme disease, but I have known foods have always triggered both muscle and joint pain with me.
      As I have been testing myself the past few weeks with glutenous foods, I am noticing bigtime joint pain and those symptoms take longer to resolve than the GI. SO do the neurological symptoms.
      Do you know exactly why gluten intolerance causes joint pain? Any info on this issue?

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    15. jjb1234 added a post in a topic How Long To Symptoms Last If ...   

      Thanks for your reply. Which neuro symptoms do you have?
      Also, are you symptomatic even with just trace amounts of gluten from something like contamination?

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