jjb1234

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...

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: Open Original Shared Link

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.

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? Thanks, Jen

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.

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...

Thanks. 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. EEK! 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...

RWG, 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.

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...

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...

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...

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...

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. ...

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...

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? Jen