nasalady
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My initial reaction was immediately "Another excuse to prescribe a drug for intervention." I am at odds with my rheumatologist about this issue at present as my bone scans showed loss enough to be of concern. He immediately wanted to put me on Boniva or Fosamax to which I declined. It took me decades to reach this point and I told him I was going to wait 24 months to see what happens to those numbers without pharmaceutical intervention. If there is no improvement then and only then will I consider drug therapy. I had a hard time walking back in November With proper gluten-free diet and exercise I am no longer experiencing any morning gel time and can run and exercise with heavy weights. I have found every time I get treated with drugs it masks symptoms that are trying to tell me something. I often wonder if I had obediently taken the DMARDS and NSAIDS if I would have survived long enough to finally get a correct DX of celiac as no one believes there is a link between my RA and my celiac. Since treating the celiac the RA and my other autoimmune problems are melting away. Just saying.
Gee, not to be flippant but my treatment has been relatively simple. Never eat gluten again. In adhering strictly to this my health has returned, or should I say, reached a level that I never enjoyed in my entire life. I now chose to live this way and the physical benefits are beyond my comprehension. Is it hard to be in a gluten eating household in a gluten eating world with gluten filled ads and smells and all that? You bet. Does it ever get me down every once in a while? I would be lying if I said no. But, the benefits so outweigh the drawbacks that it is well worth the effort every single day. There is the cure. So many other diseases are so much more brutal to fight. Cancer, Diabetes, heart disease. It makes this one seem like a walk in the park. And, yes, I had many complicating factors and have dealt with cancer and RA and other autoimmune diseases so I am not making light of anyone who has difficulty dealing with this disease. After a lifetime of doctors it is a relief to actually know what I am dealing with and to also realize there is a way to deal with it.
CS
Well said and I couldn't agree more. There is a cure for Celiac Disease....healthy, gluten-free eatin'!If it's been as simple as all that for you, you're lucky. I've been gluten free for 11 months now and I feel like I've been run over by a truck. I'm in a wheelchair and am still being diagnosed with new autoimmune diseases at a rate of one per every few months. I'm seriously considering going on disability.
I will never eat gluten again (and I've actually gone grain free recently), because eating gluten makes me feel even worse. But I'm not experiencing the magical cure that you apparently have. Don't knock medical research or the motives of those who participate in it....maybe they'll come up with something that will help me feel as good as you do!!
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Just came across this interesting article linking bone loss and celiac disease and am posting the link:
Open Original Shared Link
Very interesting article, Gabby! I'm glad these researchers are digging into the detailed mechanisms of celiac disease to find out exactly how it manages to damage so many different systems in our bodies....thanks so much for posting it!
JoAnn
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It may not be fair of me to post this here, just because I have SO many other things wrong with me besides celiac! But then again, I blame celiac for all of the other autoimmune diseases (see Open Original Shared Link, so why the heck not??
It's so disappointing because I was really beginning to feel better on the gluten free (now grain free) diet, until this recent flare of whatever else I have (some new AI disease which started flaring a couple of months ago).
I work 2 very demanding jobs: I'm a scientist supporting a NASA mission by day. I also teach math part-time at our local community college.
It's becoming harder and harder to go to the office and work a normal day. Vertigo, nausea, extreme fatigue, blurry vision, headaches, and (I don't remember what it's called but its when you can't stay awake and just fall asleep in the middel of doing somthing). Edit: I remembered!! Narcolepsy!!
My rheumy now believes I may have lupus (started me on Plaquenil). I'm just too sick to continue with this....I don't know how much longer I can hang on. Teaching is now incredibly tough as well. My eye sight goes in and out...sometimes I can't even make out faces, other times my vision is perfect. My hearing seems to fluctuate too.
Brain fog has really caused problems at times. While teaching (my part-time job), I've forgotten what I was trying to say in the middle of a sentence. Or forgotten which algebra problem I was doing while I was doing it!! At my full-time day job, I've forgotten familiar words and/or names of people I've known for a decade!! Makes it difficult to carry on a conversation.....people look at you funny when you can't rememeber something so simple.
I made a mistake on a document requesting a service recently. The person who implemented the request caught it, but what if he hadn't? I'm starting to worry that I will make a mistake that won't be caught. What it it affected the spacecraft??
Or, if it is caught, it could reflect badly on our team, and that would cause embarrassment. I don't want that.
I'm starting to think I need to be on disability, but if I'm going to end up on disability, do I wait until the last possible moment or do I leave with dignity intact? I think waiting until the bitter end will be humiliating, because it will become obvious by that time that I can no longer do my job.
I also worry because I have to drive to work and it's becoming increasingly difficult to drive when I'm having a bad day. The blurry vision and vertigo can make it really scary, also I fight sleep at times, and struggle to stay awake by slapping or pinching myself. I definitely feel that I'm as dangerous as a drunk driver when I'm like that. It's just not responsible of me to continue....I don't want to die in a car wreck and possibly take innocent people with me.
I do work from home some days, but have to take frequent breaks to lie down and rest. Sometimes my fibro pain is very hard to deal with....sometimes I can't even sit long because my behind hurts too much.
There's my vent....well, I guess I've depressed myself and everyone else enough now.
JoAnn
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I don't understand it, either, but the doctor says I have to do this. I read and read and it seemed that the second biopsy of peri-lesional skin that confirmed DH by immunofluorescence, which it did, plus all the positive blood tests (all very positive and with high titers) that it was a done deal. The doc wants the trifecta - so I have to poison myself, they say.
What was your experience?
Is this wrong or as awful as it seems? I want no room for question - the skin biopsy plus blood tests seemed positive enough.
Advice?
People with DH frequently have negative intestinal biopsies. Most doctors feel that positive skin biopsies for DH plus positive bloodwork are sufficient.
First, from the National Institute of Health (a government website - Open Original Shared Link
Dermatitis herpetiformis (DH) is an intensely itchy, blistering skin rash that affects 15 to 25 percent of people with celiac disease.3 The rash usually occurs on the elbows, knees, and buttocks. Most people with DH have no digestive symptoms of celiac disease.
DH is diagnosed through blood tests and a skin biopsy. If the antibody tests are positive and the skin biopsy has the typical findings of DH, patients do not need to have an intestinal biopsy. Both the skin disease and the intestinal disease respond to a gluten-free diet and recur if gluten is added back into the diet. The rash symptoms can be controlled with antibiotics such as dapsone. Because dapsone does not treat the intestinal condition, people with DH must maintain a gluten-free diet.
Please be aware that there are plenty of false negatives in biopsies....my favorite analogy to the biopsy process is the following:
A negative biopsy really doesn't prove much.A number of samples are taken from the lining of the upper small intestine. The number is usually rather small. The damage may be spotty in many cases.
An analogy which may help understand the accuracy of the biopsy follows. It is graphic, but effective.
Imagine that your front lawn is 25 feet wide and 10 feet deep. That is 250 square feet of grass. Now imagine that you go onto your lawn and choose, at random, 12 3-inch square samples. In none of those samples, which total less than 1 square foot out of 250, do you find any dog feces. Well, then, you can declare that your lawn is free of dog sh!t, can't you? Of course you can't.
A negative on the biopsy does not prove that there is no damage, it only means that they did not find any in the small sample. The fewer samples taken, the more likely it is that damage will be missed. Most times a lot less than twelve samples are taken, and they are all taken from within the first few inches of the small bowel.
If perchance your biopsy comes back negative, don't let it throw you.....you definitely have celiac disease! Anyone with DH has celiac (Open Original Shared Link) It may be that the damage is patchy and isn't far enough advanced to show in the samples that were taken.
If it were me, I would cite the NIH website to the doctor and refuse the biopsy; then I would go gluten free immediately! But it's definitely your decision....only you know what's right for you.
Good luck!
JoAnn
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Gemini, I've been curious before about the addiction, alcohol connection. I know, speaking for myself only, that I was addicted to gluten pre-diagnosis. I used to say I could eat pizza or pasta daily. I wonder how many celiacs are addicted not just to the booze but the wheat/rye/barley in beer and other alcohol...
Have there have been any studies about alcoholism in the celiac population? Anyone ever been curious?
This is really interesting! The autoimmune diseases in my family come from my father's side. He was an alcoholic, and he had RA....he may well have had celiac too but we'll never know. We do know that celiac disease runs in the family, though.
His father was an alcoholic too. I've often thought of alcoholism as the family curse....but now I wonder.
All of these horrible, painful conditions (lupus, RA, fibromyalgia, celiac, etc., etc.) that run in our family....did the pain cause my father and my father's father (and so on back to the dawn of time) to try to self-medicate with alcohol? Many of the AI diseases were not really characterized....not even vaguely understood, until late 20th century.
Maybe AI diseases and the associated pain are the real family curse.
Any thoughts? Or should we start a new thread?? I don't want to hijack this one.
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I've often wondered, though, if the Lyme spirochete is kind of like strep--that maybe everyone actually has it somewhere in their system, but it's not a problem for most people? If you're perfectly healthy, nobody would be testing you for Lyme, right? What if most people simply coexist with it, with no problems?
I've read that Lyme can cause gluten intolerance and/or trigger celiac--but I wonder if it's the opposite? That maybe those who already have some kind of gluten intolerance are then susceptible to Lyme, perhaps due to the leaky gut? Or not being able to coexist with the Lyme because of malnourishment, lack of proper of absorption of necessary vitamins, amino acids, etc?
I know....it's confusing! I was just answering a new post by a girl who's been diagnosed with Lyme, but she's had Hashi's for years, and she may have both celiac and Lyme. Which came first the chicken or the egg?
Do you know of any current members of this board who've been diagnosed with Lyme?
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Have you checked with companies to make certain that every med and supplement OTC and script are gluten-free? How about non food items, craft items, household repair materials, pet foods and litters, lotions, shampoos everything you come in contact with?
I concur with ravenwoodglass, you should double-check everything.
I truly believed I was OK in the non-food department (I've been gluten free for nearly one year now)....until last week when my husband found that both my shampoo and conditioner had WHEAT in them! I absolutely do not know how I missed it but I did. I'm normally very careful; for example I spent days calling and emailing companies to check every one of my meds (and I take a LOT of meds).
Good luck!
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Hello Everyone,
I'm not entirely new to this forum, but I have been trying to figure out my gluten issues. I have all the typical celiac symptoms, however, I was recently diagnosed with Lymes Disease. I tested positive for Band 41 , and now I have started a anitbiotic regiment diagnosed by my LLMD.
Let me start off by saying that I am 30 years old and I've had Hashimotos thyroid disease since the age of 14.
It all started this last Jan. (2009). I woke up one day with horrific diarreha, nausea, pain in stomach, hands that would swell at night, muscle twitches, neck pain, back pain, joint pain (mostly in my wrists and ankles), burning feeling in muscles of arms, tingling in hands and feet, itchy skin, eye floaters, headaches, stool became very light in color, and I had horrible insomnia. And believe me these are not all of the symptoms there are much more. Anyhow, I have been on a journey to find a doctor that would find out what the heck was wrong with me. Along the way I was diagnosed with Severe Vitamin D deficiency (tested a 6). I was put on 50,000 icu of vitamin D once a week for 3 months. My levels are just now back to normal. I am still taking 5,ooo icu of vitamin D3 everyday and I will probably have to do so the rest of my life. I have also been gluten free since June 1, 2009. A gluten free diet has helped, but I still haven't truly felt myself.
I have been through a liver and kidney detox which also didn't seem to help my symptoms very much. This is when I decided to follow through with seeing a LLMD. Throughout my doctor journeys they also tested me for LYMES. I was told I have been exposed to it and that my body would fight it off. And with the minimal research I have done on the internet I know this wasn't true. Therefore, I went ahead and scheduled an appointment with an LLMD. He said that most of his Lymes patients are also gluten intolerant. This can be a sign of Lymes. I'm just wondering if anyone else on this forum has been diagnosed with Lyme?
I would love to chat!
Thanks,
TIFF
Hi Tiff,
First it was smart of you to realize that your body needs help fighting Lyme Disease; you need to be on antibiotics!
I have not been diagnosed with Lyme disease, but you're definitely at the right place. I know of at least two (former) members of this board who were diagnosed with Lyme disease....it's funny, we were just "discussing" this on another thread that I had started about lupus, because Lyme disease can mimic lupus, MS, celiac....well, you name the disease, it seems as though Lyme can mimic it! LOL!
I'm sure that someone who has LD will be happy to chat with you. There must be more of them on this board.
In the meantime, I will say, yes! gluten intolerance can definitely be associated with Lyme Disease, plus all of the other "normal" celiac symptoms as well.
But some of have been wondering if you can have both Lyme disease and celiac disease simultaneously, and I would think probably so....if you want to read the latest post on that thread, follow this link:
https://www.celiac.com/gluten-free/index.ph...st&p=566640
Also, you should know that if you have Hashimoto's, you are much more likely to have celiac disease than the average person. You may be interested in the following medical papers on this topic:
Open Original Shared Link
Open Original Shared Link
Open Original Shared Link
Many of us here have multiple autoimmune and related conditions and it is SO confusing trying to figure out which symptom to attribute to which disease....or maybe even to which of our many medications!! Good luck to you!
JoAnn
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Also...
7. Do you keep up with your field...i.e., the latest research findings in medical journals?
8. Do you believe that patients are human beings with the ability to read journal articles for themselves and UNDERSTAND them??
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I also saw (but can't remember how it was done) a recipe that used meat for the crust. I might try that using maybe Italian sausage with some provalone mixed in to kind of "bind"it. Wish I would have written it down.
Happy cooking,
Susan
Susan, that's called "meatza" in the low-carb community!
There are a million variations but here's a good recipe:
Open Original Shared Link
Of course you have to omit the cheese or use rice cheese or whatever to make it cf.
Cheers,
JoAnn
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I've had both and they weren't the slightest bit alike other than some itchiness (the DH was MUCH itchier). My DH was in the form of blisters filled with clear fluid, much like a burn. The itching was horrendous. Since going gluten-free, the DH is gone. My psoriasis is mostly these flaky patches that can also be itchy, but NOTHING even close to the itchiness of the DH.
Hi Richard,
There are many different types of psoriasis; one of the rarest is palmoplantar psoriasis. Here are some pictures:
Open Original Shared Link
As you can see, it is a blistery rash. The kind of psoriasis that I have is plaque psoriasis, which looks quite different....it sounds as though you might have the same.
Cheers,
JoAnn
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My mother died from celiac complications at age 70 after 25 years of being misdiagnosed. She was told she had lupus, but in fact she had celiac. By the time they made the correct diagnosis, it was too late. She might never have been correctly diagnosed had it not been for the diagnosis of her granddaughter(my niece) at age 9 months. Subsequently my brother was diagnosed (in his 40s). Both are healthy and doing fine on gluten-free diets.
I have many of the celiac symptoms (particularly the chronic bloating/distention). I finally got my internist to test me, but I don't understand the results. My"TTG Antibody, IGA" is negative, but my "Gliadin Antibody (IGA)" has come back positive in 2 different tests, a year apart. My internist says this means I don't have it, but I am still worried.
Could someone please direct me towards a definitive test, if there is such a thing?
Thank you very much.
With several close family members diagnosed with celiac disease, you are at very high risk of developing celiac if you do not have it already. The symptoms say you probably do. False negatives are common in the standard blood tests and biopsies for celiac disease.
The best way to tell if you are either gluten intolerant or celiac is to go gluten free for a couple of weeks, and then go back on gluten. If you feel better gluten free and worse on gluten, you should avoid gluten! Simple!
Your mother is a prime example of just how difficult it can be to get the actual, firm, "gold-standard" diagnosis of celiac disease. Why put yourself through that? Have you tried the gluten free diet yet?
Here's a great link to get you started if you want to try it:
Open Original Shared Link
Best wishes.....I do hope that you feel better soon!!
JoAnn
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I had my visit with the endo today. I started to explain my symptoms, and he said "none of this has anything to do with your thyroid." Just before he came in, I was reading all his charts on the wall regarding thyroid- hypo, hyper, etc. I had all of the hypo symptoms, and a TSH of 5.05 to go along with it. One symptom on HIS chart is tingling in the arms and legs. When he told me it none of my symptoms were reated to Thyroid, I told him about the tingling in my arms and legs and asked if he thought that was thyroid. He said no, because he doesn't think there is a problem. I've read over and over, in many sites that anything over a 3 is considered hypo and should be treated.
It went on and on. I had to convince him to run an antibody test, and he refused to order any vitamin or mineral levels. The only thing that has been checked since dx is B12 (525) and ferritin(11). No tests on any other B vitamins, iodine, selenium, zinc, A, E. D or K have been run. I asked him to do a more comprehensive adrenal panel- NO. I aksed about T3 T4 conversion- NO. Then he actually said that I would stop gaining weight if I stopped eating so much! (I have been on a ow carb, hi protein, low sodium diet of no more than 1600 calories a day and exercising like a dog for 2 months and still gaining. BTW I am 6 ft tall, medium frame). That's when I burst into tears, and he finally said ok, he would write me a prescription.
He wrote it for Synthroid. I explained that Synthroid is questionable re: gluten (source celiac.org). After making me feel like a total schmoe, he wrote a scrip for Levoxyl 75mcg.
So after a good, long crying jag, I got my blood tests done. Now I wait. Have any of you experienced being treated like this? I can guarantee that I was not disrespectful, did not try to tell himi how to treat me or anything like that. I just asked questions, because I think this explains a lot. I thought once I finally was dxed with Celiac, it would be smooth sailing. Gotta tell everyone, I've had it up to HERE with doctors! Thanks for letting me vent!
What an incredible JERK!!
Is there anyway you can see a different doctor? Like an internal medicine person or something??
No one should have to go through anything like that just to be tested and get medication! This guy is on a power trip....it sounds like he wanted to humiliate you. I'm so so sorry you had to go through that!
Did you look at any of the medical publications I gave you the link? Here are the three that are pertinent:
Open Original Shared Link
Open Original Shared Link
Open Original Shared Link
If you ever see that man again, print those papers out and take them with you. Tell him that you have a firm diagnosis of celiac disease and autoimmune thyroid disorders are closely related. If he disagrees, hand him the papers.
And YES, I have been treated like that before. Which is why it will never happen to me again....well, someone can be disrespectful to me once, but I won't give them a second chance. I pay several hundred dollars a month just to have the PPO insurance so I can pick and choose my own doctors. I hope you can choose your own too.....if I were you, I would immediately look for someone else, but you may not have that option.
Please don't let someone like that make you feel as though you're wrong to advocate for yourself or to try to do your own research to find out what's wrong with you!
(((hugs)))
JoAnn
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Ah ha!....here is the answer to your question:
"When one is still eating Gluten and still breaking out with DH, the iodine test will also cause reaction. After you have become gluten-free and the DH is completely gone, it will stop working too. Eating a lot of iodine during the breakout phase can also exacerbate the reaction - so some say to eat non-iodized salt TEMPORARILY. One still needs iodine in the diet to live and once the DH goes away from being gluten-free, you should probably go back to regular salt."
This is from the second post on the following thread:
https://www.celiac.com/gluten-free/index.php?showtopic=57732
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yes, I have read about the iodine test. Do you think it would still be positive after 8 weeks on the gluten free diet?
I think it should be positive any time you have active DH blistering, even if you're gluten free....it may even work without visible DH activity.
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I thank God for this site everyday! I was diagnosed Celiac 3 months ago. Shortly after starting the diet, I gained 25 pounds overnight (literally) in fluid retention. My PCP, GI and Nephrologist can't figure it out. It's been 9 weeks and I still have all the fluid.
Another thought....have any of your doctors run a liver panel on you lately? Another condition which can be associated with celiac disease is autoimmune hepatitis (I have that too), and that seems to make me retain fluid like crazy! I certainly hope that's not the problem, but you might want to mention it to your doctor.
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I thank God for this site everyday! I was diagnosed Celiac 3 months ago. Shortly after starting the diet, I gained 25 pounds overnight (literally) in fluid retention. My PCP, GI and Nephrologist can't figure it out. It's been 9 weeks and I still have all the fluid.
Other problems are super slow metabolism! I've been eating about 1700 calories a day and exercising like mad, and I have gained 60 pounds! I know I needed to gain a lot (6' 0" tall female, low weight before dx 97
), but I am still gaining almost a pound a day! I also have muscle pain, cramps in my feet, blurry vision on occassion, and hoarseness. My kidney function tests are off, but the nephro says my kidneys are fine. He ran a 24 hour urine.My doctor ran a bunch of tests, and I am hypothyroid. My TSH was high. T3 and T4 were in the normal range. From what I have read, I have symptoms of Hashimotos Thyroiditis. I have an appointment with the Endocrinologist tomorrow, and don't want to have to fight with him about what tests to run.
My initial call to the Endo's office didn't go well. The first available appt. was December! I told the nurse about the edema, etc. She said she would try to get me on the cancellation list. I sent all my labs to the doctor, along wiht a note about the edema. I've read here and several other sites that kidney function, edema and muscle pain can alll be attirbuted to hypothyroid. The nurse called me back and said that the edema has nothing to do with the thyroid
I argued some more and got an appointment.It's tomorrow, and I am dreading trying to convince the doctor to do the antibody tests, so that he can prescribe whatever I need to fix all this stuff. Any words of wisdom from those of you who have been there? Thanks so much!
Hashimoto's thyroiditis seems to go hand-in-hand with celiac disease. There's a lot of research to back that up; here's a link to a site where I've posted a number of papers about celiac disease and related conditions....there are 3 papers about autoimmune thyroid disorders and celiac, Volta 2001, Berti 2004, and Hadithi 2007:
Open Original Shared Link
You might want to print them out and take them to your doctor's appt. I have an annoying habit of doing that myself.
Good luck!
JoAnn
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actually this is both interesting and helpful. You surmised correctly, I was thinking of the pustular form of Psoriasis. From what I have read, everyone's response and time to heal - for both entities - varies. Although the pretty common theme I hear is patience is required!
Initiallly I thought this had to be DH because I was able to see improvement, tho slow, from the diet. Prior to the diet no cream or ointment seemed to help and at least now some areas are clearing up. That, plus the reaction I had from eating gluten pretty much convinced me.
But I did find one dermatological journal article - I'll see if I can find it later - where the authors were pretty impressed by the improvements seen in their psoriasis patients while on the gluten free diet. And they observed worsening with patients who went off the diet. I am not denying your experience, because while it is pretty clearly documented in the scientific literature that DH always benefits from a gluten free diet, the connection between gluten and psoriasis, while present here and there in the scientific literature, doesn't seem to yet be universally accepted. (Otherwise psoriasis suffers would be adivsed to go gluten-free!)
I know I am not trained to evaluate rashes and someday (when money is not an issue) I will need to take myself to a physician. (perhaps after an accidental glutening.... I am having no more intentional ones!!!!!) But I found a couple of pictures of the various forms of psoriasis that looked like other pictures of DH! I couldn't help but think how easy it would be for someone to be misdiagnosed.
my healed lesions do leave a purplish spot that fades to light brown, and these cute little polka dots are still evident, another thing that points to DH it would seem.
My husband seems to have BOTH psoriasis (very bad on his hands) and DH. His dermatologist initially diagnosed psoriasis and eczema, but I noticed popped blisters which turned dark purple as they healed.....the purple spots take literally MONTHS to go away.
You're correct in that purple spots during healing is classic DH behaviour, and I think that's the only blistery rash out there which develops purple spots as it heals.
My husband is still struggling with his skin conditions, even though he has been gluten free since January. His DH has improved to some extent, although he still gets breakouts they're not as bad as his initial episode. My own plaque psoriasis is much better on the diet, and our kids have seen significant improvements in their eczema and keratosis pilaris!
Things should continue to improve for you if you remain on the gluten free diet....
Hang in there!
JoAnn
P.S. There is a test you can perform at home to see if you do have DH or not. It's called the iodine patch test; it used to be the standard test for DH. Here are a couple of links to discussions of the iodine patch test on this forum if you're interested:
https://www.celiac.com/gluten-free/index.php?showtopic=57732
https://www.celiac.com/gluten-free/index.php?showtopic=61119
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Unfortunately I can relate to this....my MIL has been very unsupportive of our needs. My entire immediate family (me, husband, two small kids) must avoid gluten.
She has been in denial ever since we went gluten free, constantly asking my husband if he was done yet with that "weird diet". He has tried to explain that he has to eat this way for the rest of his life, but that doesn't sit well with her.
She came over for a birthday party for our son, and complained about the gluten free food, even though it was just ordinary meatloaf (made with gluten free bread crumbs), mashed potatoes, salad, and Betty Crocker gluten free cake. She claimed that it upset her stomach and said "I'm just not used to eating that food". I asked her if she was allergic to rice, explaining that the only difference was rice flour instead of wheat flour.....she didn't respond.
She won't come over to eat at our house anymore, which upsets my husband. I'm OK with it though!
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Thank you for that link! I appreciate it. The biopsy that they did was ON the lesion and not beside it. I don't know of any other dermatologists in the area though.
This one is a 45 min drive.
Anyway, iodine patch test done and the pics are in my other post. You can see them and the patch test that I did on my husband as well. Same amount of time, TOTALLY different outcome.
Crimson, I can understand your frustration and disappointment! But your iodine patch test was absolutely convincing to me....and that used to be the standard test! So I think you do have your answer....
Also, you're correct about DQ7 and DQ2.2 working together to make a DQ2.5; here's a link to a thread from about a year ago which has that information:
https://www.celiac.com/gluten-free/index.php?showtopic=52131
In any case, I'm glad you're not going back on gluten!
Take care,
JoAnn
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My antibody tests came back negative. I can hardly believe it. They said it showed a low grade allergy to cow's milk. Funny that dairy products don't really bother me but gluten containing foods do. I haven't really gone gluten free. I tried for about a week watching my diet and noticed a big difference (this was only after the blood was drawn) then i went back to eating normally and have been miserable since. I'm actually sitting here crying like a baby b/c i feel so bad. I just don't know where to go from here. I can't handle the fatigue, weakness and stomachaches anymore. It's not that i want to have something like this. I just need answers and relief and everything points to celiac disease. But i guess the blood tests tell all.
Marlie, there are lots of false negatives with the bloodwork! No, blood tests do not tell all!
Yes, it's good to try to get a firm diagnosis, but if the tests are negative, and you have a positive response to the gluten free diet and you feel TERRIBLE on gluten, then please listen to your body! It's trying to tell you NOT to eat gluten!
The only reason you should stay on gluten now is if you are waiting for an intestinal biopsy. Otherwise, jump right into the gluten free diet and feel better!
((hugs))
JoAnn
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Pamela's Pecan Shortbread and Shortbread Swirl Cookies are awesome!
They have a delicate flavor, and are not dust-dry like a lot of gluten free baked goods tend to be.
I've used the Pecan Shortbread Cookies crunched up as the basis for a crust for cheesecake....yum!!
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Do the mini tacos have beef in them? And do they contain cheese? They sound good!
There are two kinds: beef and chicken. Neither one has cheese in them.
They are VERY good! You can of course add cheese or other toppings if you want to. My 4 year old son loves them....they're just the right size!
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Open Original Shared Link
These grits are stone ground and they are, with out a doubt, best in the world. They are are not instant grits and they take time to cook, but once you've gone here, you'll never go back
I cook mine with chicken broth and add havarti cheese or smoked gouda at the end, served with sauteed shrimp. Just don't get any better!!!
Yum! Shrimp and Grits.....a Southern classic! Thanks for the link and the chicken broth/gouda suggestion, Lisa! I love cheese grits!!
JoAnn
), but I am still gaining almost a pound a day! I also have muscle pain, cramps in my feet, blurry vision on occassion, and hoarseness. My kidney function tests are off, but the nephro says my kidneys are fine. He ran a 24 hour urine.
Neuropathy After Long-term Gluten-free Diet
in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Posted
Hi ratz,
FYI, you should know that celiac disease is known to continue to cause brain damage even after the patient is gluten free!
I've had lots of neuro symptoms that my neurologist believed were caused by celiac disease, so I've done a bit of reading on the subject. Here's the abstract of a medical article describing one type of celiac ataxia in four patients (from the medical journal Brain)
Open Original Shared Link
Progressive myoclonic ataxia associated with coeliac disease. The myoclonus is of cortical origin, but the pathology is in the cerebellum.
We report four patients with a progressive myoclonic ataxic syndrome and associated coeliac disease. The onset of the neurological syndrome followed the gastrointestinal and other manifestations of coeliac disease while on a gluten-free diet, in the absence of overt features of malabsorption or nutritional deficiency. The condition progressed despite strict adherence to diet. The neurological syndrome was dominated by action and stimulus sensitive myoclonus of cortical origin with mild ataxia and infrequent seizures. Plasmapharesis and immunosuppressive treatment were tried in two patients but were not beneficial. Post-mortem examination of the brain in one case showed selective symmetrical atrophy of the cerebellar hemispheres with Purkinje cell loss and Bergmann astrocytosis, and with preservation of the cerebral hemispheres and brainstem. Coeliac disease should be considered in the differential diagnosis of all patients presenting with a progressive myoclonic ataxic syndrome.
This is scary stuff!!
JoAnn