nasalady

Its hard to say if you ate something with gluten or not - but keep in mind - you've only been gluten free for about 2 weeks (which seems like an eternity at this point!). Chances are, your body hasn't healed yet, so your symptoms won't resolve overnight. Keep focusing on the big picture....there will be ups and downs. Keep doing the best you can. Hang in there and good luck.

Thanks, happygirl!

I have heard that it can take quite a while to heal; since I'm already feeling somewhat better, I have a LOT of motivation to stay gluten free. My fibromyalgia and rheumatoid arthritis have put me in a wheelchair recently and I'm hoping to get out of it again soon!

Take care,

JoAnn

I just started the gluten free diet on doctor's orders on November 25th, after my biopsy. I woke up this morning feeling better in general than I have in a long while. However, today I'm experiencing some of the vertigo that I thought was gone! Is this a sign that I've been glutened or is it just my fibromyalgia acting up and maybe has nothing to do with what I've been eating?

I suppose my question is as follows:

I don't know if I should just be focusing on the big picture (that I feel better in general) or if I should pay attention to each and every little piddly symptom? Is there a chance that a headache can simply be a headache and not a sign that I've been glutened?

I do know that there is still a LOT of potential gluten contamination that I'm risking every time I cook in my kitchen, because I still haven't gotten rid of all gluten-containing foods (DH doesn't want me to, he wants to eat them up himself so we're not "wasting food"), and therefore I still haven't replaced all of my kitchen utensils, small appliances, and pots and pans that need replacing yet. I have started to use a dedicated set of gluten free wooden spoons and my own cutting board, but I'm still worried that I'm being glutened here and there inadvertantly (for example, we just thought about the scrubber sponge we use for washing dishes!).

Anyway, I hope this post makes sense....thanks in advance for your help!

JoAnn

This was my first gluten-free Thanksgiving and I'm really happy and proud of myself for accomplishing what I set out to accomplish.

If you want to know what we ate and see the recipes, please feel free to visit my blog:

Open Original Shared Link

It's a brand-new blog and I'm still trying to get it in shape.

It wasn't easy making an entire Thanksgiving meal gluten free, but it wasn't as hard as I thought it would be either. And it was definitely worth it!

JoAnn

I know there have been a couple threads on here about a gluten-free Thanksgiving. I'm looking for a couple recipes and I haven't really found any that are really what I'm looking for.

I'm looking for:

a cornbread stuffing recipe-never made cornbread stuffing but I figure it'll be easier for a gluten-free stuffing.

You may already be familiar with this site, but if not, here's a link to a blog called "A Year of CrockPotting" (all gluten free recipes); she's posted several Thanksgiving recipes, and this is her cornbread stuffing:

Open Original Shared Link

She also has a recipe for regular bread stuffing (gluten-free bread). You don't have to use a crockpot to make the stuffings, of course.

JoAnn

I love to make Mexican food out of turkey leftovers, such as turkey tacos, burritos, or turkey enchiladas. Here is a good recipe for the enchiladas from Karina's Kitchen, just substitute turkey for the chicken:

Open Original Shared Link

Anyone else with other autoimmune diseases? I have ITP (Idiopathic Thrombocytopenia Purpura), though I'm currently untreated and just fine. It is when the spleen decides to kill off all your platelets until you bleed to death. Great!

Now I'm thinking having Celiac all my life might've contributed to getting ITP.

Yep! I have autoimmune hepatitis, Hashimoto's Thyroiditis, asthma, psoriasis, and rheumatoid arthritis. I'm being tested for celiac disease at the moment (I'm HLA DQ8). I also have a severe case of fibromyalgia that has put me in a wheelchair as of the beginning of September....there's some controversy as to whether or not fibro is an autoimmune disease.

Good luck to you!

JoAnn

Now for the questions:

1. If the prednisone and Imuran have suppressed my autoimmune diseases as they are SUPPOSED to, why should the doctor expect any damaged villi to show up in my intestines during a biopsy?

2. Has anyone else had an MRI that showed brain atrophy? Has that reversed itself since you've been gluten-free?

Thanks in advance for your help....

JoAnn

Note: I'm using the term "brain atrophy", but maybe that's an exaggeration. I looked again at the MRI report and the term they use is "mild diffuse volume loss". I guess I thought that "volume loss" = brain shrinkage = atrophy. I don't know if these phrases are actually equivalent.

My test results from Prometheus are in, and I have some questions. I would be very grateful if some of the experts can answer them. Please bear with me as I provide some background first.

Here are the Prometheus celiac panel results:

*****************************************************************************

AGA IgG: Result=1.1 U/ml; Reference Range <10.0 U/ml

AGA IgA: Result=1.2 U/ml; Reference Range <5.0 U/ml

TTG IgA: Result=0.4 U/ml; Reference Range <4.0 U/ml

EMA IgA: Result=negative

Total IgA: Result=191 mg/dl; Reference Range = 44-441 mg/dl

Alleles Detected: HLA allelic variants associated with celiac disease detected --> DQ8 heterozygous

Summary Interpretation: Results do not exclude a diagnosis of celiac disease

*****************************************************************************

My doctor said that since I'm currently on high dosages of prednisone and Imuran, he's not surprised that the bloodwork is negative.

Since I apparently have celiac genes, he now wants to do both a colonoscopy and an endoscopy....on November 21st. Which means that I must stay on gluten until then!

I'm on those immunosuppressant meds (prednisone and Imuran) because I have autoimmune hepatitis. I also have Hashimoto's thyroiditis, psoriasis, rheumatoid arthritis, asthma, and fibromyalgia so severe I'm now in a wheelchair. I've had a number of weird neurological symptoms for some time now, including peripheral neuropathy and ataxia, plus visual disturbances. I had an MRI recently which virtually ruled out MS...but it showed that my brain has atrophied more than it should have for my age (I'm 52).

According to a medical article I downloaded recently (Hadjivassiliou, Grunewald and Davies-Jones 2002, J. Neurol. Neurosurg. Psychiatry, "Gluten sensitivity as a neurological illness", 2002), neurological symptoms and even brain atrophy may be associated with celiac disease or gluten sensitivity.

I suspect that I'm at least gluten-sensitive, even if it turns out that I don't have celiac disease, because when I went off gluten I felt better, and when I went back on gluten, my mouth broke out in sores and I felt terrible. All of my "IBS" symptoms came back with a vengeance.

OK, so there are the facts as I know them.....

Now for the questions:

1. If the prednisone and Imuran have suppressed my autoimmune diseases as they are SUPPOSED to, why should the doctor expect any damaged villi to show up in my intestines during a biopsy?

2. Has anyone else had an MRI that showed brain atrophy? Has that reversed itself since you've been gluten-free?

Thanks in advance for your help....

JoAnn

1. You may very well see this reappear. When it does ask for a referral to a derm. They can biopsy the area beside the rash, make sure they don't do the rash itself. The antibodies are found in the intact skin next to the outbreak. If that rash is positive for DH you don't need to look any furthur on the celiac trail as that would be a firm diagnosis of celiac. In my particular case early on my rashes used to disappear for a couple months after a course of steriods but they would always come back. Eventually I would always have an outbreak somewhere. Hopefully others will respond with their experience as often there are differences.

2. Yes that is what DH looks like. It also leaves a distinctive purple colored scar that takes a long time to fade.

Thanks for the helpful reply! If the rash returns, I will definitely see a dermatologist.

JoAnn

Hi,

I'm currently awaiting blood test results - my new gastroenterologist ordered the full celiac panel plus DNA testing through Prometheus. I'll get results on October 3rd.

In the meantime, I've been reading up on various celiac-related topics, including dermatitis herpetiformis. I realized suddenly that in May of 2007 I had a severe outbreak of a rash that started on the trunk and spread to my extremities. The doctor described it in her notes as: "Reddish, pruritic papules. Excoriated papules sparsely distributed over trunk and on forearms."

She never did figure out what it was. I was given a topical steroid cream and after several weeks it gradually went away. That's the only episode of such a rash that I can recall, but my memory is REALLY bad right now. I didn't even remember THAT rash until I re-read the doctor's notes (I recently asked for copies of my medical records).

Is it possible that this was an outbreak of DH? or would just one episode like that make DH unlikely? Thanks in advance....

JoAnn

Maybe I need to re-state this:

1. Can DH happen once, for several weeks, and then go away and not come back?

2. Does DH look like little blisters and red bumps?

JoAnn

Hi,

I'm currently awaiting blood test results - my new gastroenterologist ordered the full celiac panel plus DNA testing through Prometheus. I'll get results on October 3rd.

In the meantime, I've been reading up on various celiac-related topics, including dermatitis herpetiformis. I realized suddenly that in May of 2007 I had a severe outbreak of a rash that started on the trunk and spread to my extremities. The doctor described it in her notes as: "Reddish, pruritic papules. Excoriated papules sparsely distributed over trunk and on forearms."

She never did figure out what it was. I was given a topical steroid cream and after several weeks it gradually went away. That's the only episode of such a rash that I can recall, but my memory is REALLY bad right now. I didn't even remember THAT rash until I re-read the doctor's notes (I recently asked for copies of my medical records).

Is it possible that this was an outbreak of DH? or would just one episode like that make DH unlikely? Thanks in advance....

JoAnn

Hi, I have been living in California for about a yr and a half during which I uncovered the devastatingly long and frustrating truth that i had been suffering from Celiac disease. Being 23, and working to just get by in a big city, I didn't have health ins so i paid out of pocket for the blood work....now I have some insurance and want to see a specialist (b/c after a yr of being strictly gluten free i am still having issues)....

so my questions are:

1. Does anyone know of a GOOD Celiac/Gastro Dr. in the L.A./San Fernando Valley area?

He's not exactly in the LA/SF Valley area, and I've only seen him once so far, but I'm VERY impressed with Dr. Peter Rosenberg in Pasadena. He is a gastro who immediately ordered the full celiac bloodwork panel with DNA typing from Prometheus for me, just because I told him (1) about doing a gluten-free diet for a short time then going back on gluten and having my mouth break out with sores, and (2) that my 4 year old granddaughter has been diagnosed with celiac disease via biopsy. I'm still waiting for the results.

Good luck!

JoAnn

Sounds like the luck of the Irish to me!

My background is mostly Irish and English, but I'm 1/4 Austrian because of my maternal grandfather from Salzburg.

P.S. This is my eighth day back on gluten, and I should add that the sores on my tongue have now spread all over my entire mouth, and it feels like I have blisters on the roof of my mouth. It's kind of hard to eat anything right now because it hurts.

I'm also very tired and very forgetful.....brain fog strikes again. For example, I think of something I need to tell my husband but by the time I walk from one room to the other to speak to him, I've forgotten what I wanted to say!! LOL!

Well, maybe it's really NOT funny.

JoAnn

Hope you don't mind I tried to show what I am going through. I did put important message in this note. (NO NIACIN for you ever, a vitamin B, not with you having liver problems.)Already knew I had hepatitis A. Seems my whole family has it since living on the farm.

Of course I don't mind...it's very informative, just a little scary! Thanks for the tip about niacin...I didn't know that.

Day 24 (July 30, 2008)

Going little crazy - Insomnia and sleep apnea higher as I was out in sun - Rash on face, arms and legs, walked only from car parked in front of store, walked into store . That night I even was dreaming (thought impossible with sleep apnea, who know. Can only go my readings on CPAP)

- using many pillows to control movement at night - harder each day to get out of bed next morning

- Swelling in hands still bad - Eyes swelling severely - seems to be getting worse everyday- jaw pain much of the time

- ongoing ear aches, neck and glands

- Asthma- taking inhalers especially at night - use them at least twice a day

- depression increasing - Brain fog bad

- don't get anything done

- severe back right rib pain - right side - also in right ribs- doubled over severe pain in right groin - much pain all over - pain level about 7 - no medication so can't bring this number down - going swimming helps

- perception of things very off (might find dishes in fridge), Severe Auditory Processing disorder worsing - avoiding people

- Continue to eat at least 5 gluten a day

- heart burn not as bad - take more allergy pills for my allergy of sulfites in bread - seems to help gerds - not eating before bed

- stomach bloating severe - hard time moving around - continuing to falling into things

- Feel alright before breakfast then day gets much worse as I eat my daily intake of gluten.

- pimples that hurt, and turn to sores are popping up all over my body.- Ongoing itching- severe

Was up to hospital week ago Tuesday, liver enzymes really out of whack. Had hamburger helper, with a trace of niacin tha night before (big big no no) - Don't whatever you do take niacin if you have liver problems. Any rate, found out also had kidney bladder infection.

AST/SGOT normal (5-40 U/L) *** mine high @ 117

ALT normal (24-57 U/L) *** mine high @ 197

Alkaline Phos normal (40-130 U/L) *** mine high @ 199

LDH normal (100-190 U/L) *** mine high @ 290

Urinalysis

ULeucocytes 500/UL High

Ublood 10/UL

No medication given because of allergies - just drinking more fluids because of kidney, bladder infection.

I tried to get into family doctor before he went on holiday, instead they booked a day after the holiday (August 8th) - obviously not concerned. Both my GASTRO and family doctors are on holidays.

Going away this Saturday, not looking forward to this weekend. Good possiblity back in hospital on Monday we will see.

Wow! Are you going to be OK? Are you sure that getting tested is worth all of this??

PS: JoAnn - just a little note - I believe your Celiac- I also believe Celiac caused my liver problems as it is causing yours - remember back to the gluten filled holidays - were you always sick before he holiday?

Yes, I do remember being "sick", especially my "IBS" getting worse around the holidays. I always attributed that to the rich food, but didn't connect it with gluten of course, because I thought I just had IBS! Diarrhea was always a problem....but I never would have thought of celiac disease.

Hope that you're still surviving!

Take care,

JoAnn

Thanks, frec and Ursa Major. Knowing that delayed reactions can happen and also that gluten reactions can vary quite a bit from person to person is helpful.

My first appointment with the gastroenterologist is scheduled for September 5th....it was the earliest appointment I could get. Oh well....

Just a quick question for those of you who are more experienced at this stuff....

I was gluten-free for exactly eight days (well, I THOUGHT I was gluten-free until I read the posts on this site that say that you have to get rid of your pots and pans and cutting boards and buy all new equipment!), and then I went back on gluten on Sunday because I want to be tested. I did feel better off gluten.

After reading Gerri's experiences on the "14th Day" thread, I was scared. But my reactions to going back on gluten were not nearly as dramatic. On Sunday, the only thing that happened was that I felt tired and a little bloated. On Monday I developed gas and more bloating, but I wasn't really sick or anything. But today I woke up with a stomach ache, and I felt really dizzy. Brain fog all day, and total exhaustion. Plus I have sores on my tongue....is that part of it?

I guess this isn't really a "challenge" because I'd have to be gluten-free for longer, and I'd have to be REALLY gluten-free for any of this to count.

Could such delayed reactions be consistent with celiac disease? Or should I be sicker than I am?

Of course, please keep in mind that I have autoimmune hepatitis, Hashimoto's thyroiditis, and fibromyalgia....some of these symptoms could be caused by those illnesses. How do you manage to sort out what symptom is caused by which disease?

Thanks, Gerri and Jessica, for your encouraging messages!

It really helps to know that I'm not alone AND that even if the doctors are frequently clueless, there is a highly informed community of people with similar health issues who are doing their best to put helpful information out there through this forum.

The brain fog thing is really scary though....and since the rheumatologist started me on Flexoril for the fibromyalgia I'm sleepy most of the day too! I'm afraid I won't be able to work soon, and I'm the only "breadwinner" in the family right now.

My day job is demanding enough and then my second job is teaching part-time (math) at a local community college. It's been SO embarrassing to make a stupid mistake in front of my students because of my foggy state!

Oh well....I'm hoping that the gluten free diet will help. How long does that typically take to really kick in? Also, I'm worried that there may be gluten in some of my medications....is there an easy way to find out?

I'm here because I'm just starting to realize the magnitude of the autoimmune problems that I (and many of my family members) are facing, and I don't really know where to turn for answers. The various diseases in our family range from Hashimoto's and Graves disease to lupus and rheumatoid arthritis. I've had Hashimoto's thyroiditis for years (thyroid is dead now), and other fairly benign issues like psoriasis and asthma. But last month I was diagnosed with autoimmune hepatitis (Stage 2 liver damage) and *yesterday* I was diagnosed with fibromyalgia....BTW, is fibro an autoimmune disease??

Two of my father's sisters died of complications from lupus. Two of my adult daughters were recently diagnosed with lupus and Hashimoto's thyroiditis.

But only one person in our family has been diagnosed with celiac disease to date (via biopsy): my four-year-old granddaughter.

I've been trying the gluten free diet since Saturday (although I may have been "glutened" accidentally yesterday) and I think I notice a slight improvement in my usual gastric symptoms (diarrhea, gas, cramping), plus a tiny bit more energy. But I had always assumed I had IBS....and since I'm overweight, I would not have thought of celiac disease until I saw the articles about overweight celiacs on this site.

I've seen a rheumatologist, who told me that he can only answer questions about rheumatoid arthritis, fibromyalgia and possibly lupus; he stated that he knows NOTHING about celiac disease. Then he spent 10 minutes questioning WHY I had children, and discussing whether or not I should counsel my own children not to have children because of our bad genes!!

My liver doctor is only focused on my liver, he doesn't seem interested in any of my problems with severe joint and muscle pain, muscle weakness, and increasing clumsiness. My internist says that she can't tell me anything about side effects of the immuno-suppressant drugs prescribed by other doctors, and she doesn't know much about autoimmune hepatitis.

So I have made upcoming appointments with a NEW rheumatologist plus a gastroenterologist. Is there anyone else should I see?

Is there a medical specialist who can address ALL of these issues, and tie it all together and give me the big picture? Or is this too much to ask? I'm feeling frustrated, I've spent days on the Internet downloading papers from medical journals and emailing authors for electronic reprints of their articles, but I'm still not sure what's going on with me.

From some of the posts I've seen and articles I've read on this site, it would appear that many of the autoimmune illnesses are linked and that celiac disease can even act as a trigger to precipitate another autoimmune disease. Is there anyone out there who has had the experience of seeing organ-specific antibodies go away after starting the gluten free diet?

Sorry about the stream-of-consciousness rambling, but I've got so many questions that I can't really pin any one of them down long enough to ask it coherently. Plus I've got a bad case of "brain fog". Which is a serious problem for me because I work as a scientist for a NASA mission.

If you read this far....thanks! :-)