Lupus? Connective Tissue Diseases?

[beebs]

Yeah- but aren't something like 40% of Sjorgen's sufferers sero negative? I read that somewhere - I was negative on my tests but I have so many symptoms - including sicca, and the rheumy said I could still have it. Bloody autoimmune diseases!!

[UKGail]

yes, I think that's right. A good rheumy observes for a period of time and might decide to diagnose based on symptoms.

[UKGail]

So it's a bit ironic that Docs have such a hard time diagnosing "seronegative" celiac disease!

[Ziva]

We have had some issues with my DD that landed us in rheumatology - involving fatigue, joint pain, weakness, hives, burning skin rashes, elevated sed rate . . . she has hypermobile joints and had lots of headaches, restless legs, leg and arm pain before we got our diets much cleaner of gluten. Long story, but in the end, some of the more effective things for her were identifying her h.pylori infection that was ravaging her gut and making b12 absorption problematic. Treating the h.pylori and getting her b12 supplementation seemed to be of great benefit to her. Her b12 blood test was fine, but the urine test showed that she was dumping large quantities (I haven't researched this myself extensively, we just found doctors that seemed to be better at improving our situation as opposed to observing our situation). We also got her some physical and occupational therapy to help her.

We still get hives and burning rashes with environmental gluten exposure (acute we can navigate, chronic exposure leads to chronic problems), but the other issues (coordination, weakness, fatigue, joint pain - sed rate had lowered) were much improved / relieved. We use Zyrtec/ceterizine as our primary relief anti-histamine. While on Benadryl, our hiving continued. Benadryl is our backup to Zyrtec . . . and i don't know if it helps us or not. We try not to be in a position of needing it. It sucks when you end up broken out in hives in a medical crisis because it seemed that all of the "bad reactions to watch for" when they are doing interventions involve hives . . . like when you are fully broken out in hives, how will you know you are breaking out worse . . . actually she would break out worse, and it just really sucked! But it was really stressful to constantly monitor full body hives.

Marilyn - would you mind sharing if it is all antihistamines, or which ones in particular, cause you hiving issues?

Somehow I came across your strings of post and was curious because of your talks about anti-histamenes. I'm new to looking into Celiac for myself. It seems I aways have some kind of congestion, but would say I was allergic to anti-histamenes and not take anything because of how they made me feel. If I took Sudafed , I felt like I was in a fog, my head itched and I would not be able to sleep at night. I was taking Cetirizine for about a month around December and found I can't take it either. Didn't have the same feeling as with Sudafed but more gas, bloating and congestion. I have been off then on gluten for the past 2 weeks because of getting another test next week. I actually think my congestion cleared up the week without gluten and now I am more congested that I am eating it again. In my blood test I had an abnormal H.pylori IgM. Can you tell me what that means?

Thanks

[Pandoranitemare]

weluvgators - wow, that is very interesting, thank you for sharing your story. The symptoms you list for your daughter mirror mine, including the hypermobile joints, but muscle cramps for me rather than restless legs. In my twenties I hardly had an uninterrupted night's sleep due to calf muscle cramps in the early hours.

I'm going to give what you said some thought, as it has strong parallels to my story. I have had peptic ulcer/stomach acid issues on and off since I first fell ill in my twenties, and it had been worsening. The symptoms vanished within a week or two of going gluten free, and recur in a mild form for a few days with exposure to trace gluten.

I haven't regularly supplemented with B12, as I wanted to focus on getting a clean and steady diet first, before adding in supplements with multiple delivery ingredients, and have only just started adding in calcium, magnesium, D, and probiotics. I'll add in the B group now too. I hadn't focussed on the B group as my iron level, although lowish, was within the reference range. My great-grandmother had pernicious anemia, and it is her grandchildren and great-grandchildren who are riddled with celiac. We suspect it was also present in at least 2 of her 4 children too, but never diagnosed while they were living.

I looked up zyrtec, and it seems it is regarded as helpful with inflammation of the airways, and calming down itchy skin, both of which are problems for me, so I shall give this a try.

Would you mind sharing whether your daughter, like me, also had negative tests for celiac antibodies and biopsy?

It sounds like you have a good handle on her condition now, but it must be hard work for you to manage it. I am so bored of cooking and trying to keep the risk of cross-contamination from our gluten eaters to a minimum.

I am new here, and just on the road to being tested for celiac, but I was curious to see a post mentioning hypermobile joints as I have Ehlers Danlos Type III (Hypermobility).

I was diagnosed with M.E several years ago as a reason for my constant fatigue, brain fog, joint pain, numbness and tingling in my extremities, dizziness etc. Then a couple of years ago I found out about hypermobility and discovered that I scored highly on the scale for diagnosis. My GP confirmed that I am indeed hypermobile in many joints, and I am receiving ongoing physio and pain management for it. Although my GP maintains that I still may also have M.E on top of the hypermobility, it is hard to define with cross over symptoms.

I have had issues with my stomach (which I put down to IBS) for a long time, but recently the problems have become more severe, to the point that I have now sought further investigation. I felt reluctant to do so, for fear of having yet another condition to worry about. Worse still fearing that my doctor would brand me an utter lunatic who was just looking for more problems! I am lucky that she has taken me seriously and is arranging blood tests for celiac.

I discovered that some people with Ehlers Danlos may be more prone to diverticulitis due to the fact that the gut is more stretchy (because the Ehlers Danlos affects collagen production making all ligaments and parts of the body containing collagen weaker and more lax).

I also turned up a fair few things on people with Ehlers Danlos/hypermobility and Celiac, it may be a coincidence, or just plain bad luck to get 2 conditions, especially as both of them have genetic links.

[Marilyn R]

It turns out that I have Lupus. Discoid Lupus from a biopsy, so it's indisputable. It will probably turn out to be Systemic Lupus, because I had a really bad neurological reaction when I got stressed out last week. I couldn't write with my right hand!

I ordered 3 books from Amazon on it for alternative treatments. From what I've browsed though, beef and dairy are the worse for our system, then carrots and celery and legumes except lima beans. I'm not sure I buy into it yet. And the autor recommended a "supervised" 7-10 day fasting diet of water only. I mentioned that to my DP and he said I'd be skin and bones.

I have no question that going gluten-free helped put me in remission for a good period of time, and that my quality of life has increased immensely since going gluten-free.

Sorry, I gave bad advice.

[Blue-eyed bandit]

Well - hopefully you won't develop full blown lupus especially since ur taking precautions and staying on a gluten-free diet. So I'm guessing whatever blood work my doctor comes up with will be positive since everyone is saying that theirs was after diagnosis with celiac? Then I'll have to go to a rhematoligist? I dunno this is all so confusing... So it's not cut and dry about having lupus plus it's trickier for us celiacs??

[beebs]

All my blood work is still negative - and I have been gluten-free for over a year, and whatever this is (some kind of connective tissue something) is only getting worse and worse, now she is saying possibly RA or PA, at the beginning it was possibly Sjogren's or lupus

A rheumy is the way to go though - for all of the things mentioned on this thread. I have a great one, she hasn't given me a diag of anything - in 6 years- but she knows and I know that something is happening and its of the autoimmune variety. Other drs could have easily just dismissed me - I have realised that a lot of them don't like not knowing - or being wrong etc. Bad for their egos or something.

Good luck with it.

[Blue-eyed bandit]

So should I be expecting my bloodwork to come back positive since we have high inflammation levels anyways with celiac? And if she diagnosis lupus I guess that means I should get a second opinion?? I don't have a rash on my face just mottled skin on legs when cold sometimes and also a rash I've had for three years that crops up when I get hot out of the shower- otherwise I don't notice it.