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Celiac And Lupus


Dino

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Dino Rookie

I was wondering if there is a link between Celiac disease and Lupus since they are both autoimmune disorders. If you have Celiac and then were diagnosed with Lupus, what were your symptoms that moved you toward that diagnosis? Over the last three weeks I either have had a MAJOR gluten hit or maybe something more might be going on. I have been dealing with fatigue, joint pain, brain fog, feeling like my heart skips beats and a loss in exercise endurance (was running 5 miles at a 9 min/mile pace and a week and a half later was struggling to complete 3 miles at close to 12 min/mile pace. I don't have the usual Celiac gi issues at this time though which is why I am thinking it might be something more than just the Celiac disease. Also wanted to hear from the guys as well on this one. I know Lupus in men is less common.

Dino


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cahill Collaborator

Having a positive ANA is not unusual for someone with any autoimmune disease but I would ask has your doc done an ANA test?, have they tested you for other autoimmune disease like Hashimoto's?

** edit to add** I just saw you have had a thyroid "work up" and biopsy ,, Negative for hashimito's and graves??

Dino Rookie

I have a doctor's appointment next week. I do not believe that I have had an ANA test done. My thyroid levels were normal so I believe that they ruled out those issues. One thing I did fail to mention is that I also have Raynauld's which my doctor says is related to the Celiac disease. It has gotten worse over the last year even though I have been gluten-free for two years now.

beachbirdie Contributor

I have a doctor's appointment next week. I do not believe that I have had an ANA test done. My thyroid levels were normal so I believe that they ruled out those issues. One thing I did fail to mention is that I also have Raynauld's which my doctor says is related to the Celiac disease. It has gotten worse over the last year even though I have been gluten-free for two years now.

Raynaud's can also accompany thyroid disease. I would get my thyroid test results and evaluate them myself. They too often say your thyroid is normal, when it isn't in a good place for YOU. If they tested only TSH and didn't look at antibodies or actual thyroid hormones, the testing is incomplete.

Do you know what thyroid tests were done? Thyroid can go up and down if you have autoimmunity. You might have been normal when they tested you, you might not be now.

cahill Collaborator

Raynaud's can also accompany thyroid disease. I would get my thyroid test results and evaluate them myself. They too often say your thyroid is normal, when it isn't in a good place for YOU. If they tested only TSH and didn't look at antibodies or actual thyroid hormones, the testing is incomplete.

Do you know what thyroid tests were done? Thyroid can go up and down if you have autoimmunity. You might have been normal when they tested you, you might not be now.

Agreed

My PCP( whom I have since fired ) said my thyroid was within normal range .When I INSISTED (putting it politely)on seeing an endocrinologist the first thing they did was an ANA and an antibody test for hashimito's. My antibody testing ( for hashimitos) came back thur the ceiling. 998.76 with normal being < 10.10

beachbirdie Contributor

Agreed

My PCP( whom I have since fired ) said my thyroid was within normal range .When I INSISTED (putting it politely)on seeing an endocrinologist the first thing they did was an ANA and an antibody test for hashimito's. My antibody testing ( for hashimitos) came back thur the ceiling. 998.76 with normal being < 10.10

I had the same thing! Got blown off by several docs because my TSH was not high enough and T4 not low enough for them, even though I had symptoms. My current doc is the one who said "we can put this to rest right now with a trial of meds". In six weeks, I was a different person. I was growing hair. I wasn't having anxiety attacks. And more.

My first antibody tests were negative, but in a couple of years she tested again and I was through the roof...TPO was over 800 (with <35 as the norm) and anti-thyroglubulin TgAb was over 1600 (with <40 as the norm).

I say this over and over again, but I wish I'd known then about the thyroid-gluten connection, I would have gone gluten-free way back then and might still have my own thyroid function. That's why I'm all over my daughters to keep gluten free, they are all hypothyroid. I wouldn't want them to cross over into autoimmune.

beebs Enthusiast

Having any other autoimmune disease is higher with those with Coeliac - especially those in the connective tissue group - which lupus is.

Joint pain would make me think connective tissue - could be anything though -there are heaps of diseases in that group, RA, sjogren's lupus - and more. Can't remember them all.


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Dino Rookie

I think I would rather have it be a thyroid issue than a connective tissue disease...well, actually nothing at all. Not to minimize thyroid disorders but know that in the majority of cases it can be treated with thyroid hormones. I was seen by an endocrinologist and followed by him for a year and a half after concern that I might have a nodule in my thyroid as well as a mother who has a thyroid disorder. just prior to being diagnosed with celiac disease.

I am used to some joint pain after I accidentally ingest gluten, but that is only a few days and usually only affects my knees. This time it has been my knees, ankles at times and feels like I have arthritis in my hands, particularly my right hand and has been lasting close to a month now. I also have had a higher level of fatigue that has been on going as well for an extended period of time. I also have had muscle soreness. Played softball last week and was sore for almost a week. Not usual since I had been running and weight training with no issues up to a few weeks ago.........Aaarrrgggg it is so frustrating.

Dino Rookie

Well, fortunately I don't have anything to add to my diagnosis of Celiac. The doctor said I overdid it and am suffering from some exhaustion. In a week's time I had pulled a 28 hour shift for a law enforcement running event and then went to St. Louis a day after for a four day robotics event. She pointed out that I have a disease (hadn't really liked the term disease so just kind of treated it like a condition) and that I cannot handle life as usual and had to really look out for my health. So I just need to take it easy and take care of myself. I think I am not completely healed....if that is even really a possibility to be truly healed as opposed to be under control.

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