nasalady
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So for starters - what would you do? I don't see that it can hurt to do the blood test. Then if it is negative I can still try elimination diet. I don't know though. I guess if I will be doing it either way it doesn't hurt to start.
I think that you already have a good idea there....get the blood test done but be prepared for a possible false negative.
So there in lies the real problem. I can't find a place to start! I find lots of symptoms and what to eat and not to eat... but I am looking for a resource that will tell me everything I need to get rid of and how to eat the first couple weeks. I need to know how "clean" my kitchen should be... I just feel lost! there's so much information! I just want something that tells me how to diagnose by elimination diet, what I eat for how long, symptoms to watch for etc...
One of the best resources for how clean your kitchen should be and simple things to eat for the first couple of weeks that I know of is the following post on Karina's blog:
Open Original Shared Link
Take it easy....identify things that you eat right now that are gluten free! Do you eat steak? eggs? vegetables? potatoes? rice? All of those things are naturally gluten free. Raw, unprocessed foods are best because when seasonings are added you can get hidden gluten in there. But Karina says it best...please read the post on her blog and I think that will give you good info to start with.
If I were you, after the blood testing is done, I would go gluten free for about 3-4 weeks then try eating gluten and see how you feel. If you feel better without gluten and worse when you eat gluten then that's really all you need to know, IMHO!
Good luck with everything!!
JoAnn
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Hi Everybody..This is my first posting and have a lot of questions on how having the gluten-sensitivity gene actually translates into real autoimmune symptoms. I have been on the autoimmune misdiagnosis roller coaster for about 4 years now. What started as red inflamed eyes turned into hip pain, extreme joint pain, feet and hand pain, skin rashes and anxiety. I have been told I have lupus, Sjogren's, adrenal fatigue etc.. My labs show a positive ana titer and a low serum 4. But my rheumy can not come up with an actual diagnosis because my labs are constantly changing.
I do have some GI issues but they would be way down on the list of complaints. Today would be day one of the gluten-free diet and I would like to know there is some hope that this could actually help.
Thanks in advance for any input, advice or experiences shared...
Irisheyes
Hi Irisheyes,
As previous posters have said, the short answer is YES. Celiac disease is a very complex disorder; most people think it only involves the GI tract, but researchers have found that celiac causes the body to produce antibodies against bone, skin, and even the brain!
Some or hopefully all of your symptoms may (eventually) go away on the gluten free diet. Like many of us, you may be sensitive to more than just gluten....other possible culprits include dairy, soy, corn, etc. Some are so ill when they start the gluten free diet that it can take months or even a year or two before all of their issues go into remission.
This has been mentioned before, but I will reiterate: if you want to be ACCURATELY tested for celiac disease, i.e., have blood tests for the autoantibodies, etc. that go with the disease, and/or an intestinal biopsy, you MUST continue to eat lots of gluten until all testing is done. You can go gluten free AFTER you finish the tests.
Now, as to the link between celiac disease and other autoimmune conditions, medical researchers have discovered that untreated celiac disease can actually "open the door" for other autoimmune disorders to develop. Here is a great article on how this happens: Open Original Shared Link.
Many of us have multiple autoimmune diseases, in fact the older we are, the more of them we have, as a rule. Take a look at the list of autoimmune diseases in my signature; I wasn't diagnosed with celiac until I was 52.
Of course, I'm a bit complicated because I also have Lyme disease....Lyme disease can ALSO trigger autoimmune diseases and fibromyalgia. But I do blame celiac for at least half of my other conditions!!
I suspect, from your name, that you're either Irish or of Irish background. Me, too.
FYI, the Irish have one of the highest rates of celiac disease in the world. And they're no slouches at developing other autoimmune diseases either! The luck of the Irish at work, no doubt!
Remember to keep an open mind and do lots of research for yourself!! You may have more than one disorder there, that always makes things complicated.
Good luck with everything!
JoAnn
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I am also trying the gluten free diet..actually started it last week in hopes that it will help with my muscle and jiont pain...along with my gastro problems.I havent noticed a difference in the muscle and jiont pain yet,but Im sticking to it anyway.My doctor is sending me for bloodwork for celiac,and I was told I dont have to eat gluten for it to be accurate...but everyone else says I do have to eat it...Im so confused!!
Your doctor is wrong. You have to eat LOTS of gluten until after all tests are done (including bloodwork and intestinal biopsy) if you want accurate results. The more gluten the better!
You can go on the gluten free diet the day after testing is done....you don't have to wait for the results!
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I'm speechless.
Very close correlation between Type 1 diabetes and Coeliac Disease.
My grandmother was a Type 1 diabetic as were 3 of my aunts, as is my older son. I am not but have Coeliac Disease ( + bloodwork and biopsy)
Mum's side of the family is riddled with auto-immune disease.
AND you are hypothyroid. Do you have Hashimoto's Disease? I also have Hashi's
Hi Nutralady,
Celiac disease is closely correlated with MANY other autoimmune diseases, particularly the thyroid ones (Hashimoto's and Graves Disease). We have all of the above in our family, plus lupus, Addison's disease, rheumatoid arthritis, autoimmune hepatitis....you name it, I'm sure I can find a cousin of mine who has it. In my case, it's my father's family that's "riddled with" AI diseases.
Celiac disease is notorious for "opening the door" for other AI diseases to develop. For more information on how that happens, you might want to read this article: Open Original Shared Link
Good luck!
JoAnn
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It can take me anywhere from 8 to 72 hours to react to gluten. Everyone is different. Some people react VERY quickly (minutes), others don't.
If it were my daughter, I would assume that the diarrhea was a reaction to the gluten; that IS the classic reaction, after all. And I would believe her physical reactions to a food over anything told to me by a medical professional .... you have to go with reality, with what you see with your own eyes, not what the AMA wants you to believe is reality.
I'm not anti-doctor, but many of them have been brain-washed into believing that it's extremely rare to have a problem with gluten, and it's just NOT. Your daughter needs you to be her advocate here, and to go with what's best for her. If she has a gluten problem, this is serious; allowing her to continue to eat gluten can lead to enormous health problems in the future, including other autoimmune diseases like lupus and autoimmune hepatitis, or even cancer!
Take it from me.....I've probably had celiac disease since I was much younger than your daughter, but was just diagnosed at the age of 52. Just look at the list of illnesses I have in my signature. I know what I'm talking about.
Good luck!
JoAnn
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Great article in the Huffington Post about the evils of gluten:
Open Original Shared Link
JoAnn
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I am thinking of calling the gastro and insisting on the genetic test before I will even consider the biopsy. I have been told that IF the genetic test is - that there is no way my son can have celiac disease. Is this true?
Well, no, this is not true. Although it is rare, there are actually people here on this board who have tested negative for the two "accepted" celiac genetic markers, HLA DQ2 and HLA DQ8, and yet they have celiac disease. My granddaughter Carly has biopsy-proven celiac disease but does not have either of those markers.
IMHO, if your son has tested positive for the antibodies, you have your answer. False positives are very unusual, whereas false negatives are fairly common. The gastro is insisting on the biopsy because it's the so-called "gold standard" for diagnosis, but false negatives are also relatively frequent with biopsies, because they only biopsy a few small areas and, unless they get lucky, it's easy to miss damaged villi if the damage is patchy.
Carly was biopsied twice, once at age two (negative), once at age three (positive). She is now gluten free and growing like a weed.
Whatever you decide about the biopsy, once he is done with testing it sounds as though your son needs to be gluten free. Here's a great link that gets you started right:
Open Original Shared Link
Good luck! Please keep us posted!
JoAnn
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Hi Woolygimp (and ChemistMama),
My DH got much worse before it got better. I eventually broke down and went on dapsone to clear it up. However, in one spot with the oldest lesions I"m still trying to heal them after a year due to secondary skin problems I ended up with because of the scratching.Same thing with my husband, Paul. His DH got worse before getting better, even after being gluten free. Ended up on Dapsone for quite a while.
However, the posters below are right, it doesn't sound like DH. DH (1) itches like crazy, and (2) leaves behind purple scars. If neither of these are true, you may want to see your dermatologist.The problem for Paul was that he developed a severe case of psoriasis simultaneously with the DH, and in a lot of the same places! It was terribly confusing and delayed treatment of the psoriasis.
It was tough at first to figure out which was which, but then it became obvious because the DH itched like crazy, and either looked like blisters or like craters where blisters once were, and it turned very dark purple as it healed.
The psoriasis behaved very differently from the DH....and it even looks and acts different depending where it is on his body! On his hands it makes his fingers crack and split, while on his knees and ankles it gets crusty. But he has DH on his knees too.
There are several different types of psoriasis, and some of them superficially resemble DH. You may want to consult a dermatologist to help you sort things out.....
Good luck!
JoAnn
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I would think that you could avoid contamination in all of those cases by using caution or a lid.
If the boiling water is splattering over in to the other pan, then yes, you could get contamination cooking pasta in seperate pans on the same stove. However, if you make sure there is no splatering, it should be ok. I would put as much separation between them as possible. There are splatter tops available for frying foods, which you could use to cover your pan if you are concerned that there is gluten in the condensation that might contaminate your food. The splatter tops would allow the pan to vent.
What if your husband wipes all the crumbs off a counter but there's still enough gluten stuck to the surface to contaminate your food? What if wheat flour is suspended in the air and lands on your salad...or you breathe it in?
What if you have a four-year-old who scatters gluten-y crumbs all over the place no matter how careful you try to be?
I don't know how all you people manage to live in the same house with gluten but more power to you!!
For those of you that can't do it, don't feel bad.....I can't either. I tried it and just about died from constantly being glutened.
I posted more about this in an earlier thread, but I don't mind repeating it....I don't think it's doing your families any harm by having them eat gluten-free. After all, your children are related to you....it's highly possible that they too have a problem with gluten or will develop one! Your spouse is not related to you but it doesn't mean that he/she is not gluten sensitive/celiac. My husband turned out to be celiac; we never would have known if he hadn't gone gluten free with me and then tried gluten again a few weeks later (beer during Super Bowl Weekend). Poor guy broke out all over with DH!!
I do all the cooking, and I've learned how to make almost *anything* gluten free (even grain free now!!). My family is NOT suffering!
For those who have roommates, etc., it's a different story of course.....best of luck to you!
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OMGosh! After the misery of the last few days, I can't bear the thought of doing this for 3 months, and even more of it, to boot. I have to work - I'm self-employed - and I can't work and feel THAT crappy. It was like my body has been seriously punishing me for going back on gluten. "You want to go back on gluten, do you? Well, here's what I think of THAT!" "OW, Ow! Oh, my belly, oh, my chest, OH, my aching head!!! I'm sorry, I'm SORRY!!!" The worst it's ever been!
Does the fact that I've only been gluten-free for about 3 weeks count, and before that, I was seriously gluteny? I'm having other immunological testing at the same time that has nothing to do with the celiac panel. I'm already immunocompromised. Should I just not care what the results are? This can't go on. I don't even care now if the GI doc believes me. It's been horrible. Today was a gluten-free Christmas with my gluten-free sisters, and the worst feeling I had was being stuffed from all their delicious cooking.
The only money being wasted is the insurance company's - I'm on an HMO. I'm already having follow-up testing on my pneumonia vaccine, which is probably not going to be effective because of my IgG2 deficiency. I'll have to get another kind of pneumonia vaccine.
I have done the Enterolabs testing. I'm waiting for the results.
Theresa, I'm sorry....I do understand! I was gluten free for about 2 weeks then went back on gluten. OUCH!! Everything hurt!
I guess I had missed the fact that you had only been gluten free for 3 weeks prior to this. Yes, that actually does make a difference! Your body probably had not had enough time to heal in just 3 weeks, so maybe you'll be OK with just 2 weeks back on gluten.
You should know that even if you were eating gluten for a YEAR, then were biopsied and blood tested, your tests still may come back negative....even if you DO actually have celiac disease! It's easy to miss biopsying the damaged areas if the damage is patchy, and the blood tests have lots of false negatives. Or your blood work may be positive but biopsy negative, and the doc will say, "well, you don't have celiac if your biopsy is negative!"
There are lots of people here on this board who have only tested positive with Enterolab, or never tested positive at all, but have all of the same symptoms as the rest of us.
Of course, I hope you do get your "official" diagnosis, just so that you know what's wrong! But I wanted you to be forewarned just in case.
Best wishes,
JoAnn
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Why oh why do researchers always want to start out by making a study invalid from inception?
Why biopsy proven ? They are happy to use the serological testing for SLE but not celiac disease???
Hmm.. sounds a bit like GI's being over possessive about celiac disease and making sure it is classified as a GI disease not auto immune.
They have completely missed the point here. Any idiot genetics researcher knows that the auto immune HLA carries the MHC. There are established markers for antigen response to gluten in celiacs which the GI's have chosen to completely ignore.
Some very cheap testing of immunoglobulin response could have actually shown who had SLA and celiac disease and perhaps even identified the genetics responsible in HLA-DQ2 & DQ8 but instead they set out to produce a misleading study that keeps celiac disease firmly as a GI disease.
How hard would it have been to monitor the IgA ad IgG response in the patients and establish a correlation (or not) between them and SLA?
gfp,
You're correct of course.....my original point in giving that as a reference was that it was one of the few studies I had seen that quoted the "low" frequency of celiac and lupus occuring in the same person. But, as you've pointed out, in this paper from the Journal of Clinical Gastroenterology, they *are* apparently trying to slant things to make it appear that celiac is not autoimmune. Which is ludicrous.
It's possible that the incidence of celiac and lupus occurring in the same person is much higher than reported, but because people see specialists for these things, they only talk to the rheumy about lupus and they only talk to the gastro about celiac, the rheumy and the gastro don't really care about the other illnesses that lie beyond their purview.....??
What do you think?
dycelia,
There's actually plenty of scientific evidence to back up a link between celiac and many other autoimmune disorders. Celiac is known to produce high levels of the cytokine, zonulin, which increases the permeability of cell walls.
This can actually cause so-called "leaky gut" syndrome, where molecules that belong ONLY in the intestines manage to sneak through into the blood stream, which in turn causes the immune system to go into high gear and frantically start manufacturing all sorts of antibodies to combat the invaders. Current theory is that this can lead to some sort of "confusion" on the part of the immune system, causing various autoimmune diseases, where the immune system is attacking the body's own organs (mistaken identity?).
You can read all about at this link (given also in an earlier post of mine in this same thread):
Open Original Shared Link
Best wishes,
JoAnn
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Well, I'm glutening up for my testing in two weeks, and I was just salivating in the store. Oooh, bread! Oooh, pasta! Oooh, candy I can't ever eat again. As excited as I am, I'm not looking forward to the bellyache, esophageal spasms, and bloating. I think I will be very mindful of what I'm eating, so I can say good-bye after the testing with a bit of a smile, because regardless, I WILL say goodbye. I will also take notes on how I'm feeling, as someone here recommended. Excellent idea!!
I hope two weeks is enough. I did a loaf of bread and mainly frozen dinners, so I wouldn't be stocking up on gluten flour and all, and so I don't have to rescrub the cupboards. After this, my treat to myself shall be a new toaster.
Two week will not be long enough. You should be eating *lots and lots* of gluten for at least 3 months, as you were told earlier in this thread. Also, if you really are celiac or gluten intolerant, eating gluten will NOT be pleasurable....it will be torture after the symptoms hit!
My advice would be to either re-schedule the tests for March, or just cancel the testing altogether. Why even bother to go through that pain and suffering if your testing will yield false negatives because you weren't on gluten long enough???
Anything worth doing is worth doing right!!
Of course, you don't have to take my advice.....but I hate to see you waste time and money if the project is doomed to failure from the start.
Good luck!
JoAnn
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Hi MsLee,
Thanks for the link.....that's very interesting research!
I've recently found out that LLMDs rarely accept ANY type of insurance. I'm paying for everything up front (including the Igenex Western Blot test), then I have to present it to the insurance company to see if they will reimburse me. It is expensive! The Western Blot is $475 and the first visit with the LLMD will be $625!
My liver enzymes have been approaching normal, probably because I've been on such high dosages of prednisone and Imuran. But recently during my "rhupus" flare, the enzymes drifted a bit higher. I was told that's pretty typical for a flare. They're coming back down now, since my rheumy upped the pred dosage.
Take care.....
Happy Holidays to everyone!
JoAnn
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Nasalady, I too have had some lyme labs come back positive recently...but due to insurance issues I may not be able to get treatment for a while. I'm wondering if the lyme could be the root. I will get back to you t his week, I am happy to have someone to talk to about all this...sorry that you have to go through it
That is really interesting....I've been reading that people who are being tested for lupus, RA, MS, etc. should probably be tested for Lyme disease as well, as part of the diagnostic process.
My family has a long history of lupus and other AI diseases....I have aunts and cousins with lupus that live in other parts of the country; some of them I've never even met. So I'm fairly confident that I do actually have a number of AI diseases.
But the original set of illnesses that I know I've had since childhood were Hashimoto's, psoriasis, and asthma. Then about 18 months ago began this incredible EXPLOSION of diagnoses: autoimmune hepatitis, fibromyalgia, RA, celiac, and now SLE. I probably had celiac since I was little but it was just diagnosed.
Now my Lyme ELISA test is positive.....I wonder if I contracted Lyme sometime in the past few years and it triggered all these new AI disorders because I already have a genetic predisposition to developing these conditions??
I'm so sorry to hear about your insurance issues....it's absolutely appalling that people who need medical care can't get it!! And now that the Democrats in the Senate have apparently rolled over and are playing dead, the insurance companies will probably get what they want....
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I was told I had IBS for decades....had bouts of terrible abdominal pain in my 20s and 30s, so bad at times I would literally end up on the floor, screaming.
Finally the doctor decided I had gallstones and removed my gallbladder when I was 37. It did seem to reduce the number of those painful attacks I'd been having, although I continued to have lots of other gastric issues....until I finally figured things out and went gluten free a year ago.
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P.P.S. With regards to the rarity of celiac and lupus occurring in the same person:
Open Original Shared Link
J Clin Gastroenterol. 2008 Mar;42(3):252-5.
Adult celiac disease followed by onset of systemic lupus erythematosus.
Freeman HJ.
Department of Medicine (Gastroenterology), University of British Columbia, Vancouver, BC. hugfree@shaw.ca
BACKGROUND: Celiac disease has been associated with autoimmune disease (eg, autoimmune thyroiditis) and the appearance of different autoantibodies (eg, antidouble-stranded DNA). Conversely, tissue transglutaminase antibodies have been detected in autoimmune disorders, including systemic lupus erythematosus (SLE), but cases of celiac disease with SLE have been only rarely recorded. METHODS: In this study, 246 patients with biopsy-defined celiac disease were evaluated for a prior diagnosis of SLE on the basis of American Rheumatological Association-defined clinical and serologic parameters. RESULTS: There were 6 patients with celiac disease and SLE, or 2.4%, including 4 females and 2 males. Their mean age at diagnosis of celiac disease was 44.7 years and SLE 50 years. In all patients, the diagnosis of SLE was established from 2 years to more than 10 years after the diagnosis of celiac disease, with a mean of 5.3 years. The celiac disease in all 6 patients responded to a gluten-free diet with histologic normalization of the small intestinal biopsies. Despite this small bowel biopsy response, SLE appeared later in the clinical course of the celiac disease. CONCLUSIONS: This study suggests that SLE occurs far more frequently in biopsy-defined celiac disease than is currently appreciated, and detection may be more likely if the period of clinical follow-up of the celiac disease is prolonged.
PMID: 18223501 [PubMed - indexed for MEDLINE]
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UPDATE: 12/11/09
I have had one blood test for Lyme disease (Lyme ELISA), which was POSITIVE.
Now I have to have the Western Blot test. More soon....
JoAnn
P.S. Thanks, Alison, for urging me to be tested for Lyme!
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P.S. With regards to Lyme disease mimicking AI diseases, including lupus, please see an old thread of mine: https://www.celiac.com/gluten-free/index.php?showtopic=62079
and the following links (which I believe were given to me by Fiddle-Faddle):
Open Original Shared Link
Open Original Shared Link
Interesting, eh?
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Hi,
Just wondering if there are others out there who have lupus (I do), or who were diagnosed with lupus before celiac & had it turn out to be "only" celiac.
I am surprised how little info there is here on the subject.
I have had 1 Rheumatologist say it is common to have both & another say it is very uncommon.
If you have any info I would like to talk to you.
Thanks!
Hi Ms. Lee,
I was just recently diagnosed with SLE, within the past two months....I have a long laundry list of AI diseases now in addition to lupus: Hashimoto's thyroiditis, psoriasis, celiac disease, autoimmune hepatitis, and rheumatoid arthritis. I also have fibromyalgia, which may or may not be autoimmune, but is at the very least closely associated with AI diseases.
I was diagnosed with celiac disease a year ago.
My rheumy thinks I may have CNS lupus, because I have a number of unexplained neurological symptoms. Actually he says I have "rhupus", which is apparently lupus + RA.
On top of all of this, I've just found out within the past couple of days that I may have Lyme disease! My Lyme ELISA test was positive, although I haven't had the Western Blot test yet, which seems to be the gold standard.
I've always blamed celiac for the other diseases, because of the following article:
Open Original Shared Link
But now I'm wondering if Lyme could have triggered many of them, or if it could be mimicking some of them?!
I've just got way too much going on with me medically speaking.....
But I would be happy to talk with you!
JoAnn
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P.S. Are any of you who have reacted to wines allergic to casein or eggs? Because I just remembered that those substances (among others) are sometimes used during the "fining" process during wine-making. Here is a link to an old thread where they discuss this subject (from this board):
https://www.celiac.com/gluten-free/index.php?showtopic=24397
And a link to a page about the process of fining:
Open Original Shared Link
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Oh my gosh, I thought ALL wine was gluten-free. Is there a list of non-gluten-free wines anywhere?
Thank you to the original poster for this thread, and thank you nasalady, for your post.
Hi Lynayah,
Unfortunately there's no comprehensive list, but what we've done is to call our favorite wineries and ask which wines (if any) are aged in new barrels that have been sealed with wheat or rye paste. For example, at one small winery (Claiborne and Churchill) they only do this with their Pinot Noirs, which made sense to us because that's what we were drinking when we got glutened!
Another winery (Kynsi) told us that all of their whites are in stainless steel, so we know we're safe with those.
Here's a link to an older webpage (some of the links therein are broken) about gluten free wines:
Open Original Shared Link
Good luck!
JoAnn
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This is a fabulous gluten-free Sugar Cookie recipe too; check it out!
Open Original Shared Link
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I've been reading that some wines might have barley added? I've never been bothered by wine before but I had a LITTLE of a Charles Shaw White Zin last night and definitely had symptoms during the night. It's the only thing I can think of that could have caused it. Thoughts?
We are very sensitive and use 2-Buck Chuck wines frequently with no problems. The only wines we've reacted to were those aged in barrels sealed with wheat or rye paste.
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OK....I finally got around to making Chicken and Dumplings!
I made a batch of this same grain-free biscuit dough and dropped spoonfuls on top of the chicken stew then turned the Crockpot to "High". They were done in about 45 minutes (firm to touch on top and when I inserted a table knife nothing stuck to it).
Yum!! I was really craving Chicken and Dumplings....it's nice to know that I can have a grain free version!
Can Medication Affect Test Results? Labs?
in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Posted
Hi kelliac,
My gastroenterologist gave me a clinical diagnosis of celiac disease even though my tests were negative (blood work and biopsy). I have the HLA DQ8 marker, reacted very strongly to a gluten challenge, and have family members with celiac disease, including 3 of my 5 grandchildren. He said that my prednisone and Imuran would suppress antibody production and allow my villi to re-generate.
I guess the bottom line is that we need to listen to our bodies. How do you feel when you eat gluten? How do you feel when you don't? If you feel better gluten free, then you have your answer! It doesn't really matter whether they call it celiac disease or gluten intolerance because the treatment is the same for both: the gluten free diet!
Good luck with everything!
JoAnn