Frustrated...

[Emsstacey]

I posted a couple years ago with a high positive deamidated gliadin, osteopenia, chronic mouth sores, fatique, headaches, vit d level of 18 and joint pains. My dr said it was not convincing of celiac. I have talked to my family dr and he basically dismisses it as well. I have trialed the Gluten-Free diet without very noticeable change, but my main symptoms are no longer GI and more migraine/hormonal related.

Fast forward to this year, headaches more frequent and chronic sinusitis. My mouth sores are better after adding sublingual b12. The frustrating part is that I finally talked my grandmother into asking about a celiac panel. She has bad osteoporosis, frequent diarrhea and rheumatoid arthritis as well as some sort of blood disorder where she is not producing enough red blood cells. Her dr agreed that it is very likely celiac that has caused her problems but does not want to test because she thinks she should be able to eat whatever she wants at her age.

sigh. Is it time to stop chasing a diagnosis and go Gluten-Free for good? Any advice?

[FooGirlsMom]

When your gluten intolerance isn't the typical GI issues it can easily get dismissed as something else. However, anytime you have a family member with Celiac or diagnosed gluten intolerance and you, yourself, have some sort of auto-immune issue that cannot be cured through conventional methods (and possibly only tolerated through pharmaceuticals) I'd be looking at the gluten-free diet as a possible cure.

People often think that just because they don't feel wonderfully better within a month of a gluten-free diet, that they are not gluten intolerant, esp. if they feel worse. Lots of us feel worse before we feel better. Reason? We have secondary food allergies, at least initially. For instance, I cannot eat soy, dairy or very much corn. If I do, I feel bad - irritable, indigestion, ill, etc. These things did not affect me before going Gluten Free. But when I eat "cleanly" and don't have cross-contamination issues, or react to secondary allergies, I feel amazing. It can take months to root out all your issues as you begin to heal.

Just my 2c worth

FooGirlsMom

[Emsstacey]

I have a great-aunt on the other side with confirmed celiac from Mayo. I have ITP and my family has lots of autoimmune: psoriasis, lupus, meniere's, polycythemia--you name it.

I know the answer, I suppose, it is just that a month or so in... I get so tired of the difficulties of eating out and the prep work to always have healthy Gluten-Free meals available. It would help my motivation to have a more concrete answer. I am going to ask for a repeat panel again and hope the dr will order it.

When your gluten intolerance isn't the typical GI issues it can easily get dismissed as something else. However, anytime you have a family member with Celiac or diagnosed gluten intolerance and you, yourself, have some sort of auto-immune issue that cannot be cured through conventional methods (and possibly only tolerated through pharmaceuticals) I'd be looking at the gluten-free diet as a possible cure.

People often think that just because they don't feel wonderfully better within a month of a gluten-free diet, that they are not gluten intolerant, esp. if they feel worse. Lots of us feel worse before we feel better. Reason? We have secondary food allergies, at least initially. For instance, I cannot eat soy, dairy or very much corn. If I do, I feel bad - irritable, indigestion, ill, etc. These things did not affect me before going Gluten Free. But when I eat "cleanly" and don't have cross-contamination issues, or react to secondary allergies, I feel amazing. It can take months to root out all your issues as you begin to heal.

Just my 2c worth

FooGirlsMom