Lupus

[Daphne do]

I have been going to this wellness center and they did a bunch of test on me and now I have lupus since they told me I feel it every where they said I loose mussel and I did today I couldn't even pick up 5gallon bucket I'm just over freaking out once it's in my head I think I'm dieing they they said my kidneys are not working properly neither is my man I can't remember it wasn't my liver but another organ is working properly I guess I'm allergic to a bunch of things I ate in the last week because I didn't know , garlic, black and white pepper, chocolate, cranberries, Brewers yeast, bakers yeast, lime, flaxseed, grapes, Honey dew, goat's milk, millet, pistachio, those are all my new allergies besides everything outside so to get to the point can any one tell me about lupus I read online but I guess I don't understand how it effects you like does that cause my heart palpitations, or is that why I can't lift things I'm weak , I don't know if I'm not feeling better because like the lupus is really hurting my insides or if it's still from eating that stuff . I forgot to say I went to Dr yesterday and found all those things out sucks cause 90% of my food has one of those ingredients . 

[Ennis-TX]

I do not know much about lupus but one of my customers at my bakery says she eats gluten free because of it. A bit of a light to your allergies, I know I keep reading they are life long but I had "Capsicum annuum" (Paprika, bell peppers, jalapenos etc) and along with corn, beets, whey, and a few others show up on my allergy test years ago.  I removed them for a year and tried them later on and off. The beets capsicum annuum, have gone away but I react much worse to whey and corn now. 
For now looks like your going to be doing home cooking with fresh unseasoned ingredients til your immune system chills out. You can season with fresh herbs to get flavor while avoiding your allergens it seems from your list. Think like basil, thyme, oregano, etc. The kidney issues also mean a specific diet avoiding salt, and some other things. You should probably see about talking to a nutritionist. 

The lifting something heavy, I am unsure if lupus effects are similar to gluten ataxia but I can not lift stuff, constantly drop stuff, and have coordination issues for few days after exposure.  It does seem to resolve after a bit but I am assuming this has to do with antibodies going down.

[GFinDC]

Hi Daphne,

I don't know much about lupus but I know it is a serious disease.  I suggest you find a different doctor and get a 2nd opinion on it to be sure.

[cyclinglady]

I agree that you should get another opinion from a medical doctor.  Alternative wellness centers might be helpful, but not always.  I just read this article about a study done concerning celiac disease.  So many naturopaths and chiropractors are not diagnosing celiac disease correctly.  

https://www.reuters.com/article/us-health-altmed-celiac/alternative-medicine-practitioners-may-market-bogus-celiac-tests-treatments-idUSKCN1S74G0

In my non-medical opinion, those allergy (IgG) tests are not accurate at all (and the board of certified allergy and Immunology agrees).  This site explains it well.  

https://www.kidswithfoodallergies.org/page/unproven-methods-food-allergy-tests.aspx

You probably should be diagnosed by a rheumatologist (MD) who specializes in lupus.  I do not know your health insurance situation, but it is definitely worth further investigation.  

 

 

[Daphne do]

Thank I will call a rheumatologist on Monday and I'll see if the regular Dr for allergy test

[cyclinglady]

23 minutes ago, Daphne do said:

Thank I will call a rheumatologist on Monday and I'll see if the regular Dr for allergy test

In the meantime, consider a food/environmental journal.  Often that is a great approach in helping to identify allergies or food intolerances.  Of course, avoiding gluten is critical.  I know if I get gluten exposures, it seems to set off my other autoimmune disorders.  

[Daphne do]

So I live in upper Michigan I call the only rheumatologist in Marquette and they are not taking any new patients now I have to go to Green Bay and pay $350 just to ask them to take the test for lupus that doesn't seem fair 

[kareng]

I don’t know much about Lupus - could your regular doctor order the test?

[Daphne do]

19 minutes ago, kareng said:

I don’t know much about Lupus - could your regular doctor order the test?

I don't know I have an appointment on Thursday this week to ask them because I couldn't go to rheumatologist I'll let you know

[cyclinglady]

I would think your Primary Care Physician (GP or internist) could order some tests for lupus:

https://www.mayoclinic.org/diseases-conditions/lupus/diagnosis-treatment/drc-20365790

[Daphne do]

I went to the Dr in Marquette mi and he listen to me for once they took 10 viles of blood from me cause there is not one test for lupus so he's doing them all and I'm got referred to a allergist im very surprised that he actually did the test at first the nurse said I don't think your insurance will pay for it I said I would pay for it so not sure if I have to pay or insurance but they did the test in a month I get the results

[kareng]

I am glad you were able to get your tests closer to home.  Let us k own how it goes. 

[cyclinglady]

I am glad too! 

[Daphne do]

Ok so the just regular Dr says I don't have lupus and I don't have food allergies and I'm not allergic to cats how is that possible I have been allergic to cats my whole life I had cats I was very sick found out it was the cats ok besides that which Dr do I believe because something besides gluten is making me sick if I'm not allergic to food what is it then man this is so frustrating one Dr says I have all these things the next says I have none what is wrong with me then I'm having such a hard time with this for real what do I do thanks for reading this 

[cyclinglady]

Here is my two cents.  

I have  celiac disease and Hashimoto’s.  By chance, during a repeat endoscopy, I was also diagnosed with autoimmune gastritis.  I take some thyroid hormone replacement, but that helps with thyroid function and does not bring down my thyroid antibodies.  There is nothing to do with the Gastritis until I become iron or B-12 deficient.  Who knows, but another autoimmune disorder may brewing.  What can I do about it?  

My doctors and I think that adhering to the gluten free diet is extremely critical.  After all, by avoiding gluten, my body stops producing antibodies that damage my small intestine.  It also seems to calm down my over active immune system (allergies).  In addition to a clean gluten-free diet, I try to avoid processed foods, sugar and fast for 12 hours each night.  All this has improved my health.  Will that fourth autoimmune disorder appear?  Maybe, but what is the point of knowing?  I really try to avoid drugs as one of my most severe allergic reactions is triggered by medications.  Which ones?  It is a gamble with each new drug and sometimes old ones.  

Reducing stress, eating right for you ( e.g. identify food intolerances) and exercising helps me.  We all must find our way.  

It is good that you are being proactive.  Sometimes medical does not have all the answers.  Allergy testing is flimsy at best.  It is about a 50-50 chance of IGE responses being correct.  Not good odds.  Then there are possible Mast Cell issues that most doctors not know about and do not show up in standard allergy testing.  Even with a Mast Cell Activation Syndrome Diagnosis, there is not much treatment beyond chemo type drugs and antihistamines.  There are no allergy tests for this as it is not an IgE response.  Try keeping a food and mood journal.  

I wish I had better answers for you.  

 

[Daphne do]

  clcyinglady  Ok so what your saying is on my own figure out what foods bother me cut them out stay away from gluten and maybe if I have those other autoimmune diseases they might not bother me or I guess make me feel worse I'm sorry I'm just having a hard time understanding all of this it's so overwhelming thank you for responding

[cyclinglady]

 

It can be overwhelming, especially when you are feeling awful.      The food journal can help.  Being strictly gluten free can help. Within a year of my gluten-free diet or so, my enlarged thyroid and nodules actually disappeared.  My thyroid antibodies did drop too.  So, managing celiac disease can be critical to your overall health.  It can make it easier to identify other issues.  

If you continue to feel awful, do see your doctor.  Keep advocating.   I kept resisting additional testing thinking that I was somehow letting gluten into my diet.  Turns out I was doing a good job adhering to the diet.  The source of my symptoms was another autoimmune disorder, Gastritis.  But even my Gastritis has resolved (asymptomatic).  I am pretty sure it will come back, but I am trying hard to prevent that from happening.  

Lupus can be tricky to diagnose.  Make sure your doctor is up to date.  

https://www.mdedge.com/rheumatology/article/168702/lupus-connective-tissue-diseases/new-sle-classification-criteria-reset

Hang in there!  ?. You will find your way!  

Edited July 2, 2019 by cyclinglady

[GFinDC]

Hi Daphne,

An elimination diet is a good way to identify foods that cause symptoms.  Start by choosing 5 foods to eat and stick with those foods only for a week or 2.  Hopefully you will choose 5 starting foods that don't cause you symptoms.  A possible starting diet would be chicken, eggs, spinach, nuts, broccoli.   These foods may not work for you but it is just an idea of starting foods that might work.  So choose your own.  Make sure you choose one high protein food.

After a week or after your symptoms have reduced, add one new food.  Keep those 6 foods as your diet for several days to see if there is any new reaction.  If you get  a bad reaction stop eating that food.

This is a simple way of determining problem foods.

[KristyM]

I have Lupus and Celiac. One does not cause the other however one can trigger the other. I suggest going to a rheumotologist and getting an antibody test done. This will determine if you have Lupus. A gluten free diet will help eliminate inflammation from Lupus but will not cure it or get rid of it. If you do not get a proper diagnosis of lupus it could lead to organ failure and possibly death. I hope this helps.

[Posterboy]

Daphne,

If you are investigating the possibility of Lupus ....I assume you might be having problems with skin and joint issues.

Look  into SIBO as a possible cause...SIBO happens in Celiac's too.

Here is a nice overview of the Skin connection in Lupus from verywell  health and  a couple longer more technical papers about this skin/SIBO connection.

https://www.verywellhealth.com/the-link-between-rosacea-and-ibs-sibo-4000518

this will give you a place to start.

Here is a great overview entitled "The Gut Microbiome as a Major Regulator of the Gut-Skin Axis"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6048199/

And this one a little older about acne and how SIBO can be connected entitled "Acne vulgaris, probiotics and the gut-brain-skin axis - back to the future?"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3038963/

I would also recommend this recent article by Chris kreser that explains why SIBO can be hard to diagnose and treat.

https://chriskresser.com/sibo-what-causes-it-and-why-its-so-hard-to-treat/

I hope this is helpful but it is not medical advise.

Posterboy,