nasalady

Here are a few dinners that my family will eat, but require minimal effort on my part when I've had a long day at work:

1. Gluten free chicken and apple sausages, Trader Joe's Macaroni and Cheese, and a bag of salad.

2. Fish tacos made with frozen tilapia microwaved with butter and Key Lime Pepper in pre-made taco shells, plus salsa, sour cream, pre-shredded cheese, etc. for toppings. Plus a bag of salad.

3. A bunch of Trader Joe's Mini-Tacos, and a bag of salad.

4. Gluten free kielbasa, mashed potatoes made from Potato Buds (I spice them up with a dash of ranch dressing and garlic powder), plus a frozen veggie cooked in the microwave.

I did a quick google search, and found that Lyme Disease and Lupus are often diagnosed (or mis-diagnosed) as each other. Apparently, Lyme can also cause high ANA levels. (Open Original Shared Link)

FF, wow, that essay at the above link almost makes one think that there's no such thing as an autoimmune disease! It's all Lyme Disease!

There's just one little fly in the ointment for me.....lupus is the "family curse" in my family. Those few of my relatives who don't have lupus have some other autoimmune disease (Hashimoto's, celiac, and RA are popular too). I doubt that Lyme Disease is hereditary.

Seriously, there's no harm in asking to be tested for Lyme, but I'll be very surprised if that's the answer to my situation....but thanks again for the links! I'm quite sure that there are many people with LD who've been mis-diagnosed with all sorts of other illnesses, so it's really important to post this info in a forum like this!

JoAnn

I did a quick google search, and found that Lyme Disease and Lupus are often diagnosed (or mis-diagnosed) as each other. Apparently, Lyme can also cause high ANA levels. (Open Original Shared Link)

A few years ago, there were a few members here who had Lyme Disease, and who had been previously diagnosed with Lupus, MS, and various neuro disorders. Not to suggest that all Lupus and MS cases are Lyme (though some believe this to be true), though--I just want to suggest that you rule out Lyme, as I have run into so many people who have had it, it's starting to get scary. (I don't have it, AFAIK.)

Here are just the first couple of site I found--there are many, many more:

Open Original Shared Link

Open Original Shared Link

Hope this helps.

Thanks for the links, Fiddle-Faddle....very interesting!

I went grain free just a couple of days ago, and I have to say I feel better....less bloating!

Also, I've lost 5 pounds!!

JoAnn

I had no idea that small an amount would do so much. My symptoms before were extreme tiredness and irregular bowels mostly - not tummy cramps and headaches LOL

Is that strange?

Not strange at all.....

First, it really doesn't matter how small an amount of gluten is involved, unless it's in the ppm range. Just a crumb falling into your soup, or even flour floating in the air landing on your food can do it!

But symptoms produced by a glutening can vary quite a bit, even in the same person from one episode to the next. For instance, one time I might have major D to the point that I can't be far away from a bathroom, and the next time I'll have neurological symptoms such as vertigo and blurry vision. The one constant symptom for me is a migraine that feels like the top of my head is coming off! My symptoms start anywhere from 6 to 36 hours after eating gluten.

Sorry that you had to go through that! I hope you feel better soon!

JoAnn

Click here.

Thanks Peter!

Hi,

I was looking for a post entitled:

"Celiac - The Autoimmune Connection, A quantum leap is coming"

originally posted by a member who is now Banned, I believe (veggienft?). I can't find it anymore!

I thought that it was very informative and helpful....is there some reason it was removed?

JoAnn

In my case yes, I do get bleeding sometimes, if I have a glutening incident anyway. Also sometimes little patches of almost transparent paper thin tissue show up in the bowl. I think that is the villous lining of the intestines coming out. Sort of like a thin layer of skin. Far as I know I don't have Chrohn's although one of my younger brother's did have it. This doesn't happen to me now unless I screw up real good. Sometimes I wish I had understood this stuff better back when he was alive. I wonder if I could have helped him some.

GFinDC,

Intestinal tissue coming out sounds more like Crohn's than celiac, I think. You can definitely have both celiac and Crohn's....and if your brother had it, you might want to be checked to see if you do too!

Take care,

JoAnn

I have been off my diet for 4-5 months noticed some blood tonight. Have been badly constipated, waking up with diarrhea and massive stomach pains, I know this is from not being gluten free but does this cause the bleeding too. It is unlikely one would develop bowel cancer at 23 ?

Rectal bleeding can be a symptom of Crohn's Disease too. Crohn's is another autoimmune disease. People with Crohn's frequently have celiac disease as well....here is a link to an article about this:

https://www.celiac.com/articles/915/1/Celia...ease/Page1.html

You should see your doctor about this, of course. And hopefully resume the gluten free diet!

Good luck!

JoAnn

Hi, I think I need to stop eating rice as well as all other grains.

I just need to come up with a replacement food first. I think I am going to try bean flours by Bob's Red Mill.

What was the difference from before to after for you? I still feel out of it and it has been about 6ish months gluten free I am pretty sure eliminating rice will make a difference. Did eliminating rice make you feel with it again?

Thanks, Riv

Hi Riv,

I'm planning to go grain free too. I've been reading blogs like Elana's Pantry:

Open Original Shared Link

and NoMoreCrohn's:

Open Original Shared Link

Elana bakes with coconut flour and almond flour only. I think she is now dairy free as well. Erin at NoMoreCrohn's is following the Specific Carbohydrate Diet, which is a bit different (not dairy free). There's a MONSTEROUSLY long thread in this very forum, all about the SCD (152 pages!):

https://www.celiac.com/gluten-free/index.php?showtopic=62006

I haven't done this quite yet, but my daughters Robin and Cheryl and Robin's husband Steven have all gone grain free and say they are feeling MUCH better! Cheryl has lupus and Addison's Disease, and has improved enormously....she isn't sleeping all the time now, and has energy to do things. Steven is now off all his medication (he has fibromyalgia, as do I), and is running 1/2 mile a day. Robin says she's lost 15 pounds.

In any case, the people here on the SCD can also give you their testimonials.....I really think grain free is the way I'm going to have to go.

Good luck!

JoAnn

P.S. I saw your post in the other forum inquiring about people from Vancouver Island. Does it count if you WANT to be from Vancouver Island? My husband and I keep our eyes on the real estate offerings in that area because we'd love to live there some day.....you're lucky!

Wow, I was a little surprised to see he still has new breakouts after all this time. Is he getting gluten or too much iodine somewhere? It didn't take this long for me to heal.

Hi Angie,

No, I don't think that he's getting gluten from anywhere....he and I eat all of the same foods (I generally cook them) and I would be getting glutened too. I'm using iodine-free salt right now too.

I thought that I had read on this forum that many people had taken a very long time (months, even up to a year) to be completely break-out free....is this not the case? If I'm wrong about that, we'd better figure out if there is a source of gluten that we're not aware of.

JoAnn

nasalady,

before you switch drugs, you may want to have him taper off the dapsone for awhile. I started at 50 mg, which gave me my bad side effects. I lowered it slowly, a half a tablet at a time, reducing the dose every week until I reached one where I didn't break out. Near the end of my dapsone experience, I was on 6 mg a day, and my side effects went away and I didn't have any new breakouts. I'm off Dapsone now, yahoo!

Also, there is a topcial dapsone now, it isn't indicated for DH, but my dermo gave me some samples for my old sores and it seems to help. HAven't tried it on new breakouts...

(the topical dapsone is called Aczone, it's for acne).

Thanks ChemistMama! I spoke to my husband and found out that he's been starting and stopping Dapsone at random (stopping when he feels too lightheaded and starting up again when he has a new breakout of DH). I told him about your recommendations and he says he will follow your plan of tapering down. He's badly broken out with DH on top of his feet right now and the psoriasis(??) on his hands is absolutely dreadful! His fingers are splitting and cracking and extremely painful.

It's really frustrating because he seems to have two or more awful skin conditions simultaneously, and the dermatologist just doesn't know how to deal with it!

P.P.S. I'm mostly of Irish heritage too....

This source explains that wheat, barley, and rye weren't introduced into Ireland (and Irish people's diet) until a much later date than other countries. Therefore we have more difficulties with gluten and are more susceptible to celiac. Check out the link for a better explanation.

Hey everyone....here is an abstract from a medical journal article published in 2001, which is entitled, "Why is celiac disease so common in Ireland?".

Open Original Shared Link

There are concentrated "pockets" of celiacs here and there around the world (Ireland is one hot spot) and archeologists and agrarian historians collaborate to find out why. I believe that Celi2009's explanation (above) is at least approximately correct.

I think that the general idea is that you will find the highest rates of celiac disease in those areas which relied on foods other than wheat, barley, and rye the longest, historically speaking, but which today ingest large quantities of gluten-containing foods.

This is due to the fact that celiac disease kills babies/small children, and frequently leads to infertility in those who survive to adulthood as well, so susceptible people/families are weeded out of the population fairly quickly (i.e., people like us).

Therefore populations in places which have been growing wheat the longest have lower rates of celiac disease...the "weak links" have been mostly eliminated.

P.S. Celi2009, I couldn't get your link to work.

UPDATE: I have now been to see my rheumatologist; on the basis of my malar rash (I emailed him a picture), my symptoms, and the elevated anti-DS DNA antibodies I am now on Plaquinel (one of the standard lupus meds).

He believes that I either have lupus or a related "overlap syndrome".

Also, here is the answer I got from the moderator at WeHaveLupus.com (Saysusie)....I reproduce it here because it's got a lot of very useful information:

A positive ANA does not necessarily mean that you have Lupus. There are several other diseases that also have a positive ANA. However, most persons with active Lupus do have a positive ANA. There are 11 criteria used to determine if Lupus is present, a person must meet at least four (4) of those eleven criteria. The "Lupus Foundation" website has a new interactive link "Could I Have Lupus" which is really helpful to those who feel that their symptoms may be due to Lupus. It is informative and easy to understand.

www.lupus.org

With reference to your questions: "Does the high C3 negate the high level of DS DNA antibodies? & "do I have to have a low level of C3 in order to be diagnosed with lupus?"

First, let me give you a bit of explanation so that you'll understand the tests. The complement system is one of the natural defense mechanisms that protects our bodies from infections and perhaps tumors. Measurement of complement components aids in the diagnosis of immunologic disorders, especially those associated with deficiencies of complement components (such as multisystem rheumatic diseases, such as systemic lupus).

Decreased levels of C3 are associated with autoimmune disease, neonatal respiratory distress syndrome, bacteremia, tissue injury and chronic hepatitis. Decreased levels of C4 may indicate disseminated intravascular coagulation (DIC); acute glomerular nephritis, chronic hepatitis and SLE.

Increased levels of both C3 and C4, in addition to increased concentrations of C-Reactive Protein, are linked to acute inflammatory disease and tissue inflammation (As happens in Lupus).

So doctors are looking for indications of inflammation (increased C3 & C4) &/or indications of auto-immunity and/or kidney involvement (decreased C3 & C4).

If Lupus nephritis (kidney involvement) is indicated in the C3 & C4 compliments, the DS DNA test ( along with antinuclear antibodies and levels of Ig & IgM ratio) help to support the diagnosis of Lupus nephritis and helps to determine the extent of damage caused by the nephritis. The IgG/IgM ratio of anti-dsDNA antibodies represents a significant parameter used by doctors, to distinguish patients with lupus nephritis from those without renal involvement. So, one test does not negate the other. Evaluation of anti-dsDNAisotypes is simply a diagnostic tool to define subsets within Lupus (SLE) patients who have different clinical manifestations. In particular, the IgG/IgM ratio of anti-dsDNA antibodies are used as a diagnositc marker for lupus nephritis during the course of the disease.

All of the tests are used as aids in determining if a condition exists and the extent of that condition.

Also, please know that, for diagnosis, Anti-dsDNA antibodies are frequently detected in active SLE, but they are not specific for SLE as they are also present in up to 30% of other disease groups. Therefore, doctors will use the aggregate results of all tests, personal history, and presenting symptoms to make a diagnosis. All tests are merely parts of a combination of things used to make a determination.

I hope that this has been helpful to you. Please let me know if it confused you further and/or if you need further information!

Peace and Blessings

Namaste

Saysusie

Just wondering if undiagnosed Celiac disease could cause gallstones?

I had my gallbladder removed a couple of years back as they found gallstones and as I was having pain and issues with my stomach, obviously still didn't feel good after and finally was diagnosed with celiac 2 years later. Could this be the cause of my gallstones?

Hi Lisa79,

I too had my gall bladder removed, but that was more than 15 years before I was diagnosed with celiac disease. Celiac disease was almost my last illness diagnosed but I'm convinced it was the first autoimmune disease I developed, probably when I was a very small child.

Thanks for the link, Beverly....that's interesting that there seems to be a connection.

JoAnn

hi, I don't know if you looked into it, but there is such a drug called sulpha-pryadine. Our son is on it as he couldn't tolerate dapson. Dapson IS a terrible drug. Sulpha-pyridine is not avail in drugstores. your doc needs to order it and it is free as it is actually under the guidelines of a controlled test for dh. it is not a new drug. it is what was used before dapson. has far less side effects and is used all over the U.K. which is the epicenter of this disease. The creams etc don't work at all. Avoid colchicine, which makes dapson look like a walk in the park. push hard with your doc, and google the sulpha-pyridine. good luck.

Thanks dh mom! My husband hates the dapsone because it makes him feel really weak and light-headed. He plans to ask his doctor about sulphapyridine.

We went to Oregon for a week recently....drove there and back from Southern CA with a 3 year old and a 4 year old. All four of us have gluten issues and are gluten free.

I concur that speaking with the top manager works wonders! Triumph Dining Cards are extremely helpful as well. The link below is to a topic I started about our experience at a Sheraton hotel during the trip:

https://www.celiac.com/gluten-free/index.php?showtopic=61550

Also, during another search for somewhere to eat breakfast, I called a Denny's Restaurant in desperation. I asked to speak to the manager and she assured me that they would work with me to ensure that my family had a safe and healthful dining experience. Denny's actually has a pamphlet about allergens in their food, which was a pleasant surprise.

When we arrived, I again asked to speak to the manager on duty (it was a different person). I mentioned my phone call and gave her a Triumph Dining card for the kitchen staff and waitress. She started to hand it back saying that the cooks only spoke Spanish, but I showed her that the card is in Spanish on the back side.

So everyone read it and we did not have any problems at all! And this is at a Denny's on Sunday morning!!

Thanks for starting this topic!

It's very frustrating, though, to say the least. It's also hard to ask other people who have lupus because not everyone wants too deep a knowledge about what they have. It's a small percentage of people who want to dig that deep and learn about the blood work.

Yes....I went to one of my autoimmune Yahoo groups and posted a plea for help with the blood work results yesterday. I know there are a number of people with lupus but not one person has responded. They probably just don't know.

I hope someone on this forum can pipe in with some information on this!

I know that there are a lot of very smart, very informed people here that probably do know something....I hope so too!

Have a good week-end!

Thanks...you too! I will try not to think too much about autoimmune diseases this weekend!

That's too bad that your daughter is having these reactions; I hope you figure it all out and that she feels better soon!

As for me, I used to get car sick as a kid all the time, whether I had eaten just before getting in the car or not! My trigger was just riding in the back seat. I used to roll the window down on long trips and stick my face out; it was the only way to prevent disaster!

I still have some problems with motion sickness to this day....I don't know if this has anything to do with celiac disease. Maybe some people just get car sick?

But, you said your daughter doesn't always get car sick....so maybe it is cross-contamination. I tossed out all my old stoneware baking dishes because of gluten contamination.

With regards to your timeline question, when I react to gluten, it's usually about 12 - 48 hours after a glutening. But everyone's different....some people react MUCH more quickly than others, within minutes, or an hour or so at most.

Good luck with everything!

JoAnn

At the end of 2007 I noticed I was had lost weight. Over a couple of months span I had blood work, ct scans, colonoscopy, endoscopy, upper GI. Only thing found was low Vitamin D. My doctor recommended A gluten free diet. When I started the diet, my total cholesterol was 170 and my triglycerides were under 100.

I had blood work recently and my cholesterol and triglycerides had gone up 30 points each. I read the labels and was very careful choosing the gluten free foods that were also low in fat and cholesterol. But I also noticed that the gluten free foods I was eating had little fiber and were not made from whole grains, I was eating foods with both before going gluten free. My portions had not changed, the only thing that was different, was I was getting less fiber and the pasta, cereal and bread I was eating had litle to know fiber and wasn't made with whole grains.

I've read the article about people with undiagnosed Celiac having low cholesterol because they body was bot absorbing it. Six years ago, while still eating Gluten my cholesterol and triglycerides were high and I started eating more fiber and whole grains and numbers went significantly lower. Is it possible that the lack of fiber and whole grains in my diet was caused my higher cholesterol numbers?

Actually, many people find that their cholesterol goes lower when they remove ALL grains from their diet and just eat natural (unprocessed) foods: fresh veggies and fruit, meat, eggs, fish, poultry, nuts, beans.....sort of a hunter-gatherer diet.

Open Original Shared Link

Instead of foods made with grain flours there are a number of websites and gluten-free cookbooks that offer recipes made with almond flour or coconut flour. Both are nutritious high fiber flours and make delicious muffins, cookies, and other baked goods. Elana Amsterdam uses both:

Open Original Shared Link

It may be worth trying.....

The only 2 symptoms I have that fit from your listing above is the high ANA (really high!) and the newly discovered slight anemia. I am not a rash person and have no signs of anything like that. My niece's husband's mom has lupus and has always had the malar rash, so I know all too well what that looks like.

I'm sure it's an added kick to have your autoimmune problem staring you in the face everyday!

If you don't mind my asking, JoAnn, did your rheumatologist suggest what your blood results might mean? Or did they do that thing I hate......stare at your blood results with a look of horror along with "How can this be"? I have actually had some doc's tell me that they have absolutely no clue why my results are the way they are! How's that for comfort?

Wow.....if one of my docs ever said anything like that I think it would scare the c*&p out of me!

Anyway, as I mentioned earlier, my rheumy said that the high level of anti-DS DNA did not mean I had lupus. Then he said something about the complement levels being a good sign......??

COMPLEMENT COMPONENT C3C: 210 (Reference Range: 90-180 mg/dL)

COMPLEMENT COMPONENT C4C: 42 (Reference Range: 16-47 mg/dL)

He did not explain why I would have such high levels of anti-DS DNA antibodies without having lupus though. Those antibodies are very specific for SLE.

I would like to understand why that is....which is why I was hoping for a lupus expert to jump in and contribute to this thread. The only things I could find on this is the following:

from Open Original Shared Link

"Tests for detecting anti-ds DNA antibodies and complement. High levels of anti-ds DNA and low levels of complement C3 suggest kidney damage. (It should be noted, however, that some patients with severe kidney damage show low levels of anti-ds DNA.) Testing for anti-C1q antibodies now appears to be an even more reliable indicator of lupus nephritis."

But there's something else about C4 at this URL:

Open Original Shared Link

My C4 is in the reference range, not high or low...but I don't know what it all means. I just don't know enough about these blood tests.

The other question I have is about the 11 criteria....as I understand it, and PLEASE somebody correct me if I'm wrong, if you have the symptom now or you have had it in the past, then you have a match.

Is that correct?

Anyway, I really need to email my doctor and explain to him that I have the malar rash, the photosensitivity rash, etc. It may change his mind. I've just recently realized that I was experiencing these things.....I know that sounds funny, but I have always had problems with my skin flushing bright red at inappropriate times (I have the very fair Irish skin that blushes easily), so I wasn't paying attention to my symptoms until just the past few days.

I do wonder if he decided that there was no point in giving me one more horrible diagnosis....especially because I'm already on Prednisone and Imuran, which are a couple of the meds used to treat lupus?

Ah yes......reality. As in reality bites.

Here is a picture of a malar rash.....the so-called "butterfly" rash:

http://spider.ipac.caltech.edu/staff/joann.../malar_rash.webp

Unfortunately, it's ME....taken last night.

What I can say is that whatever's going on with you sounds as though it could be some sort of autoimmune process.

Have you ever tried the gluten free diet to see if it made you feel better?

Hi again,

I forgot to mention that it's very possible to have more than one autoimmune disorder at a time. I'm a great example of that!

The good news is that many people have said that the gluten free diet has helped most or all of their illnesses go into remission, although it takes time.

You do have a puzzling set of symptoms and I wish you the very best in your quest to figure out what's going on.

Take care,

JoAnn

Here is a gluten free apple tart recipe that is delicious, from one of my favorite gluten-free bloggers, Erica (aka RissaRoo). She is a member of this board but hasn't been around recently....

Open Original Shared Link

My family loves it! Hope it works for your daughter!!