mslee

Hey just an Update I saw my GI today;

He says the Lupus, Sjorgrens, and now they believe I also have Autoimmune Hepatitis are all autoimmune complications brought on by the Celiac being left untreated.

I have a Liver Biopsy, Rheumatologist apt, and more test results next week.

Oh also got my Celiac panel back, it was positive ...even after a couple months gluten free

He said my dairy intolerance should be temporary, until my body heals itself and can digest properly again.

From what I understand they call the Biopsy the "Gold Standard" diagnosis, I'm not sure if both blood and biopsies are needed. I found it strange he ran the Celiac panel after the biopsies and diet change but I don't think he expected to find Celiac during the colonoscopy...but they did, lucky me!

Really, Lucky me!

Hi

I'm about on month 3 too,

Had to take dairy out of my diet after going gluten free, have tested it a couple times and got really sick so you might want to consider that....I'm not sure if it is the lactose or casein in dairy that bothers me but my GI said to give it 6 months and try re-introducing it.

I have noticed some of the replacement flours bother me I think it's the soy.

Keep a diet diary, it really helps you will start to notice which foods make you feel sick.

I've had to cut out anything greasy too that helped alot!

good luck!

That's very insightful of you to question the lupus diagnosis after discovering your celiac disease. So many docotrs get this wrong and it's partly due to the fact that Celiac overlaps so many other symptoms for other diseases.

My 22 year old niece tested neagative via blood work for celiac disease, even though her aunt (me) has celiac disease and she has many of the symproms I had before going gluten-free. Of course, they told her she does not have celiac disease....period. Then they did other autoimmune testing on her and told her they thought it PROBABLY was lupus but never seemed to give a definitive answer. When I looked at her blood work, I noticed she had tested positive for Sjogren's, which I also have. You know what the doctor's told her.....nothing. I told my sister (her mother) that she has Sjogren's and I got the rapid blinking for a response. My sister called the doctor and their response was she did not have Sjogren's and this test was a false positive because of the lupus! My niece has many of the symptoms and problems that go hand in hand with Sjogren's so I told my sister the doctor's were wrong and she does indeed have Sjogren's. When my sister then told the doctor I had tested positive for Sjogren's, all of a sudden they recognized she had Sjogren's.

Moral of the story.....when it comes to autoimmune problems, many overlap with symptoms and trying to get any kind of correct diagnosis can become difficult. You have to go with your gut instinct and whether or not you are having symptoms. Having celiac disease can affect other tests and create false positive's so sometimes the medical profession discount the test when you do indeed have that problem. It's mind boggling sometimes. You may want to wait until you are gluten-free for awhile and see if that doesn't calm things down a bit so you can get more accurate testing results. I wish you luck

with it all!

Thank You!

It is all very confusing, and it does take time...I'm trying to be patient

So many possibilities!

I should have them check for Sjogren's as well

Good Luck to you and your Niece

Hi again....I so far do like my dr (see post above) but....

as I've been doing research I ran across several folks from austin who like Dr Lubin

Open Original Shared Link

sounds like he helped provide 300 free celiac screening tests for the celiac awareness run tomorrow in austin

Open Original Shared Link

i just found out about this

hope it helps!

Hello,

My first post here, I'm Jen from upstate NY. Dx with Systemic Lupus three year ago and Sjogrens this past may. I also have Raynauds and many other lupus related issues including severe complicate migraines that sometimes cross over to seizure type events.

Being tested for Celiac today. What led me to the celiac test is I had my first seizure event of the season this past Tuesday after not having one for three months. Same pattern the past 3-4 years. I get migraines year round 10-20 a month but only get the complicated kind in the fall, winter and spring, so what is the trigger?

I found a site that mentioned daylight hour changes and low serotonin due to celiac. Made a lot of sense and would explain a lot of other symptoms such as muscle weakness in legs, etc. I really don't have significant gut issues but the gut does feel 'clean' when I sometimes take bread out of the diet.

Anyway, I'm so curious to get the initial labs back.

Would be interested in any feedback you have, may try the gluten free thing regardless of the labs.

Jen

Hi Jen Welcome!

I am fairly new here too, they DX me with SLE Lupus a few years ago I kept getting sicker and sicker.

They just found the Celiac since going on the Gluten Free diet I am feeling SO much better. It's amazing! Defiantly worth considering, remember the blood tests are not always accurate.

I am still in the process of getting a correct DX at this point I don't know if they mis diagnosed me with Lupus or if I have both, I have more Dr apts over the next couple weeks to find out.

Just wanted to say Hi and welcome...apparently if you have one autoimmune disease it is very common to have others.

I just found this website may provide some insight

Open Original Shared Link

Open Original Shared Link

>< it was same as usual with this doctor too...... 5 mins with me, didn't even do a physical exam, said something like we'll do some blood tests and check your thyroid and starts to leave but I stopped him and mentioned celiac disease and if he could do the panel testing on that, he said he would, but I couldn't tell if it was on the order or not when I was looking at it. I never even got a chance to mention lyme....... and he had me schedual a follow up for a MONTH later.

Does everybody get treated this way? This is how every doctor I have ever seen has been with me. It's why I just gave up getting this treated.

I can barely walk around and I get, we'll check your thyroid. When the nurse came back in I asked her what was I suppose to do about how I am feeling right now??? I read like how in the thread you linked they would ask for you to give you a percentage of how you feel you are doing, right now I would be at about 10%, maybe 15, and the nurse just goes, um, I guess just watch your diet. That was the only advise I got and was sent on my way.

I need to lay down, I think I am getting a sinus infection on top of things now.

oh that sucks!

What kind of Doctors are you seeing? I've had to see probably I'M NOT KIDDING like 50 Dr.'s and countless testing before finally getting this celiac diagnosis. ( I'm not well off either it has NOT been easy)

Most Dr.s seem terribly out of date about how much diet really effects us. Before June 08 they thought I had Lupus and there had been no advances in lupus treatment in about 40 years so they (my Rhuematologist) just kept watching my blood while I got sicker. I had to see a Gastroenternal Dr. (while in the process of seeing a specialist for every symptom I had. ) The Gastro Dr. found the Celiac. & Only then because it had done so much damage to my insides.

A few tips I've found:

~ Usually older Doctors are more old fashioned and more apt to give you a pill or follow the text book

~ Dr.'s more recently out of medical school may be better informed about illnesses such as Celiac,

(but they may not have seen as many cases or the life experience so thats something to consider too)

~ you may have to try more than one specialist

~use the internet for Dr. research, don't just pick one off your insurance list...it can be tedious but some Dr have been reviewed that can be helpful

~if the office is overwhelmed by too many patients not enough Drs you will get the kind of treatment you described...try to find offices that can get you in soon, keep your eyes open for signs of overstressed staff also how well the team functions together

I can help you with some internet research if you like, I'm pretty good at it (have had lots of experience )

e mail me or something...im new here so not sure how all that works yet

good luck, don't give up

The Botanical name is they only way to know exactly what species of Cinnamon you are buying/consuming Real Cinnamon is listed as (Cinnamomum verum or cinnamomum zeylancium) With Cassia Cinnamon being known as (Cinnamon aromaticum)...

Botanical aka Latin names where given to plants to solve the problem of correct /& definite identification...ex there are thousands of types of "Daisy"

Here are some interesting links about cinnamon & spices:

Open Original Shared Link

Open Original Shared Link

I'm a plant nerd I was a Horticulturist before I got mysteriously very sick....Not getting my hopes up too much but keeping the fingers crossed this is all diet based. Something that is treatable and will eventually be understandable! The plant knowledge helps....

Finding it's alot more than Gluten making me sick: dairy, soy, sorghum, some nightshades are rearing their ugly heads. (pos corn and citrus too )

Yeah supposedly butter has the lowest casein content of all dairy so it is supposed to be ok if it has no additive or coloring, I put this to test yesterday....and "glutened" myself. Ghee Indian clarified butter is supposed to be lower yet than regular butter. I may try that down the road but have pretty much excepted that I will never enjoy dairy again.

I have an apt with at traditional allergist Thurs. will post results

I'm no expert I'm very new to Celiac but a basic understanding of biology and the plant world has been very helpful

hang in there!

Don't get discouraged (not easy I know).... If one Dr wont listen to you keep trying until you find one that will.

Even my Gastro Dr (who I do like) said a Celiac blood test was not necessary after his assistant had recommended one based on my symptoms. Later that really bothered me so I kept leaving messages that I wanted that test done, they didn't get back to until after my Colonoscopy biopsy came back & showed there was pretty major damage inside....caused by Gluten intolerance.

By the time I made it into the Gastro Dr I too felt like I was completely falling part something was majorly wrong and I could not keep going on without real help. I moved from one town with not enough Dr.s to one that has a Great Medical Community (unintentionally) thats when I was finally able to get some decent medical care.

Also the irritability is supposed to go away on a Gluten free diet thats one thing I've always struggled with... trying to be patient and give it time.

GOOD LUCK! Hang in there!!!

For me this Diagnosis has been a Great thing! I've been a mystery case my whole life, it has not been easy. This mew diagnosis gives me HOPE!

30 days Gluten Free:

* more energy that I have ever had, seems to be building by the day!

* the tummy I've had all my life is gone, looks like im getting a six pack!

* I realize the nausea I've had all my life is because I've been eating food I'm not supposed to, so now instead of an everyday/ all the time thing... it's a clue as to what I am and am not supposed to eat.

* putting on weight... but thats a good thing.

*I'm able to share this info with my family, several of them have similar symptoms and major allergy problems...my experience is helping them pin point their trouble foods...and feel better

* a diagnosis helps, before people (even my loved ones) seemed to think "but she doesn't look sick it cant be that bad" or people would think I was lazy, taking a free ride, or a hypochondriac.

* I'm able to share my experience, and help others who have similar problems... who knew there could be so many!

* It's an easy cure.... your not on Meds for the rest of your life

Yep.

Joint pain was my first symptom it just kept getting worse, I'm hoping gluten free will help.

When I was working I started dropping things and loosing control of my hands. I still do at home, in the Kitchen especially.

I've seen a couple neurologists had MRI's, had nerve testing, and Brain scans...all showed nothing, no abnormalities. Dr. just says I have a migraine disorder.

at the same time I was diagnosed with Celiac (about a month ago) they also found I have 2 types of Colitis.

I think Celiac, and colitis both cause joint pain. I think Nightshades do make it worse.

Arthritis, Joint pain, sciatica, allergy & gastro problems run in my family.

Experimenting, watching and waiting... It will take time for my insides to heal. In the mean time trying to pin point other problem foods

* I will say this, in my 15 years as a human guinea pig, alternative/holistic med/natural/diet/exercise...have helped so much more than Modern Western Medical has been able to.... ex. If I had not eaten wheat for the past 28 years I wouldn't have most of the problems I have today. Problems no Dr's until now, have been able to give a cause.

I used to say "yeah natural medicine seems to help, but there has to be some major root to all of this some Dr will find."

they found it ... it was in my diet and the meds they kept giving me

GOOD FOR YOU mslee!

very nice to meet you...

Thanks!

Hello nice to meet you too!

Yes, I can fully understand the "but you don't look sick"

glad to be here

I've had some good luck with caprylic acid as well...have not yet researched the best brands of supplements but the Solgar brand did seem to work better than the more generic version I bought the next time.

Just wanted to say ...

I cut out gluten about a month and a half ago after a colonoscopy showed I have celiac.

Since then I feel a million times better, but am super sensitive to what I eat.

Cutting out meats that are greasy and high in fat has helped the "stringy/oily" symptom.

I have to be careful with oils, acid foods, spicy foods (nightshades), and have cut out processed meats/foods (even some just packaged chicken breasts have sodium phosphates added you have to read the lables.)

My Dr. recommended cutting out dairy for 6 months and then testing myself by eating it.

Basically just try to as much fruits and veggies as I can, and eat lean meats, nuts, corn keep foods whole and simple...even bland at first you will feel better and it looks like some foods can be re-introduced.

Your best bet is to at least try and see a Dr. to get tested, if they poo poo the idea find another Dr or try taking gluten out of your diet and see if it helps. (for a + test you have to have gluten in your system) wheat pasta, beer, pizza were huge triggers for me

good luck! hope you feel better!

great info! thanks for sharing!

so glad I finally have a diagnosis! and found this site.

* feeling SO much better without the wheat!*

Hi

I live in Austin and am newly diagnosed, my Gastro Dr is Dr Stassen. I have only seen him twice

(well 3 times counting the colonoscopy but i was thankfully out for that one )

but he has been very good. He seems compassionate and kind (not always easy to find in a Dr) and works with a large group of Gastroenterologists I figure many minds available are better than only one when it comes to getting to the root of a tricky problem.

also he is very experienced and from Ireland, Im finding many with celiac are of Irish heritage

here is a link ....

Open Original Shared Link

good luck!

Hello!

Austin here.

I've found wholefoods, wildwood art cafe, chipotle, NxNW, to have some food I can eat.

newly diagnosed so super sensitive to everything I eat...but getting a little better

Wow!

Interesting!

I am also a German, Irish, Scottish, Welsh, Swedish, Choctaw, Black Foot Mutt!

I wonder if those of pure Native American (both North and South) blood have a better tolerance to nightshades? Or do they just make everyone feel cruddy?

oooh, yeah on second thought ... probably none of those left

....but in theory ?