So when I was pregnant I was diagnosed with sjrogrens and celiac… But after having baby the sjrogrens antibodies started to decrease on tests and now are completely negative. I have chronic allergies and joint pain, I recently went to an allergist and I was diagnosed with a sulfite allergy dust mites and pollen… But I react to a variety of foods like rice, oranges etc. I think I’ve narrowed down that I have a histamine intolerance and sulfite allergy . I think it is mast cell activation syndrome. Or possibly lyme but my western blood test was negative, but the tick bite was 10 years ago so I think I have long term chronic Lyme disease maybe…I’m lost and confused and along with that bipolar and anxiety. Inflammation. I’m tired of being sick. I don’t know which group I belong in.
Dear CDiva, there are no rules about how many groups that you can be in. You are very welcome here. My experience with being tested for Sjogren’s is that it waxes and wanes, it can show up several times negative, then show up strong. I don’t understand this, and I’m not certain you can get a satisfactory answer to this anywhere at this moment I do hope that I’m wrong though.
I do recommend that you additionally join Ben’s Friendsyme support group as they are much more famiar with the types if tick Bourne illnesses and the antibiotics that treat them.
It seems as though you belong in any group you wish to join. I hope that you can get to a better place very soon.
Wishing you well,
SK
CDiva, I can imagine how frustrating all of that must be for you. The issues are real, even if the doctors are shrugging at what they are exactly. Hoping they narrow it down for you. You are in the right place….we all understand being sick and tired of being sick & tired.
I agree with SK. SS waxes and wanes and can take years to show up consistently on a blood test, or not. You can still have the symptoms, though. However, sicca syndrome can exist with other illnesses, and be temporary (sicca and sjogrens can be synonyms, but I have noticed that docs tend to use sicca syndrome when they are unsure if one has the actual disease versus symptoms, temporary, brought on by something else going on). If you are still having symptoms, though, then it does not matter what your test says. I have gluten sensitivity, as does one of my sons, and I think, from what I have read that celiac and SS are kissing cousins. Not sure about the gluten sensitivity. My son is actually allergic to wheat.
It could be leftover Lyme Disease. I'm not a doctor, but my gut is telling me it could be related to what you are experiencing even though the test was neg. I think test results aren't always that accurate.
The big question, CeliacDiva, is how well are you functioning? Can you go about your normal activities? take care of your kids? exercise? do housework? Or are you unable to function?
I have chronic allergies, too, which are a nuisance for sure, but do not interfere with my functioning. So, I would not describe myself as sick or take meds to clear them up. But that's me. What is a typical day like for you?
I function but I have a lot of limitiations. When I go to them gym I itch all over during and after. Then thr next day I feel like I’ve been hit by a truck. My joints ache of I ingest gluten. I have waking panic attacks for no psycholigical reason(chemically induced ) I react to perfumes lipsticks laundry soaps medicines dental office anisthetics mint, vitamins. My body is a walking allergy. I get sores down my throat a lot. Almost anaphylactic.
Taking care of my daughter exhausts me
I'm with you on the perfumes, cosmetics, laundry soaps, and so on. Have you heard of multiple chemical sensitivity? No treatment for it that I am aware of -- I just try to avoid all the things I react to. My friends with perfume don't get it, but eventually they learned not to wear perfume if they are spending time with me.
I think the joint pain is par for the course with celiac: http://celiacdisease.about.com/od/symptomsofceliacdisease/a/Celiac-...
How old is your daughter?
But here is what my hunch is, Diva. Be very careful about the gluten, keep talking to your GP, stay away from perfumes and such, and that may be all there is to it. Manage the anxiety, and it may help with all the rest. Having a young child can be an anxiety-inducing experience.
Taking care of your little one is, of course, the main job for you right now. There is no way around that. I remember being ill with the boys being little. This is the time to simplify your life as much as possible....which is so much easier said than done. Still, put up as many things that need to be dusted and you can live without. Simplify meals. Sleep when she sleeps (if she is really little) or sleep when you can grab a nap in your day and redefine housework. Treat yourself with the same tenderness you do your daughter and nix the guilt. You didn't ask for this, and you would choose differently given the choice. Some of what it means to be living without a diagnosis, or even with, is to do triage on a moment by moment basis.
CELIACDIVA said:
Taking care of my daughter exhausts me
Thank You SK, I will join the Lyme Group as well. Yes with the tests being inaccurate, people think Im a hypochondriac, when the symptoms are real, getting the diagnoses pinned down and on paper helps me know how to treat it and also to not look crazy. When you are labled bipolar and anxiety....many people think the physical symptoms are in your head, which Im sure alot of people in these support groups may be used to stigmas because our symptoms are not always visible. Thanks for the reply and warm welcome.
SK said:
Dear CDiva, there are no rules about how many groups that you can be in. You are very welcome here. My experience with being tested for Sjogren's is that it waxes and wanes, it can show up several times negative, then show up strong. I don't understand this, and I'm not certain you can get a satisfactory answer to this anywhere at this moment I do hope that I'm wrong though.
I do recommend that you additionally join Ben's Friendsyme support group as they are much more famiar with the types if tick Bourne illnesses and the antibiotics that treat them.
It seems as though you belong in any group you wish to join. I hope that you can get to a better place very soon.
Wishing you well,
SK
dancermom said:
I'm with you on the perfumes, cosmetics, laundry soaps, and so on. Have you heard of multiple chemical sensitivity? No treatment for it that I am aware of -- I just try to avoid all the things I react to. My friends with perfume don't get it, but eventually they learned not to wear perfume if they are spending time with me.
I think the joint pain is par for the course with celiac: http://celiacdisease.about.com/od/symptomsofceliacdisease/a/Celiac-...
How old is your daughter?
DANCERMOM, my daughter is 18 months, thanks for the reply. She is almost at terrible 2! and this stage is exhausting for someone without health issues. Im glad Im not the only one dealing with perfume issues. Thanks for sharing your testimony with this. My stespsons who are here part-time wear colonge sometimes and that is bothersome as well. I have to balance, gluten free diet with a husband and 3 children who are not. trying to balance this all is hard. I guess we need to take it a day at a time. Im reaching out because Im in desperate need of a support group and I want to help others with the knowledge i have about these conditions.
Bookgeek, Thanks for the comment on simplifying. I have been following a blog on simplifying life and that has been a goal. A lot of goodwill donating and sorting still needs to be done. I agree a simplier diet, a simplier lifestyle will make things easier.
Bookgeek said:
Taking care of your little one is, of course, the main job for you right now. There is no way around that. I remember being ill with the boys being little. This is the time to simplify your life as much as possible....which is so much easier said than done. Still, put up as many things that need to be dusted and you can live without. Simplify meals. Sleep when she sleeps (if she is really little) or sleep when you can grab a nap in your day and redefine housework. Treat yourself with the same tenderness you do your daughter and nix the guilt. You didn't ask for this, and you would choose differently given the choice. Some of what it means to be living without a diagnosis, or even with, is to do triage on a moment by moment basis.
CELIACDIVA said:Taking care of my daughter exhausts me
Enjoy life, thank you for empathizing with me. Yes, the doctors cant narrow it down, so we have to become our own advocates and our own doctors in a sense. I love going to the library and reseaching diseases so i can better treat and understand.
EnjoyLife said:
CDiva, I can imagine how frustrating all of that must be for you. The issues are real, even if the doctors are shrugging at what they are exactly. Hoping they narrow it down for you. You are in the right place….we all understand being sick and tired of being sick & tired.
Hi CeliacDiva,
May I strongly suggest that you continue with your Rheumatologist and allow him proper time to diagnose you completely. I agree that we always need to be our own best advocates, and tirelessly research, however this Doctor has dedicated his life to medical science. Their education is never completed, and they have gained so much knowledge just by practicing that we can never hope to achieve their level of expertise.
As you surely know, autoimmune diseases, in many cases, are have so many similarities, and many are known as the great imitator, however, there are good treatments available, and in some cases will actually slow down the progression of the disease, but these do us no good until we can put a name to the disease.
I will always highly suggest that everyone be under the care of a licensed medical professional. If you feel you have been under his care long enough for a diagnosis to be made, then perhaps it is time to seek another Doctor's help. As much as we have to take good care of ourselves, it is my opinion that having autoimmune disease of any kind, and not having a Doctor is playing with fire and gasoline, especially with systemic autoimmune.
Please know that I say this with the utmost kindness and concern, as one old enough to be your mom, if not your grandmom, I can honestly tell you that my life would be drastically different had I been diagnosed and treated at your age.
Wishing you well,
SK
I read all about how DAO is an enzyme that lives in our guts naturally and breakdown histamine. But we eat too much processed meat and even fresh cooked meat saved til the next day in there fridge will double histamine overnight. And taking plenty of flush free niacin will help it bleed out of our systems and make us feel better and help reduce a chemical in our system that hurts our heart health too I have generally a lot less anxiety when I am on flush free niacine too.( But that is about methylation- a whole new discussion).