33 replies to this topic

[suziq0805]

About 3 months ago I was diagnosed with gluten sensitivity (blood and biopsy negative). I've been gluten-free for about 3 months, and I've been strict with it. At first I noticed less headaches, but lately they're kinda back. I've had acne clear up and some improvement in stools- although it was never diarrhea, and sometimes my gums don't feel inflammed. But things with my doctor seemed a bit sketchy possibly so I switched to a new GI for follow-up. She agrees that I do not have celiac, but didn't think I could blame gluten sensitivity on the muscle pain and weakness I still experience. So she ran bloodwork since I've had slightly elevated ANA results before- but it's never been high enough for a diagnosis of autoimmune diseases. This time the initial levels were elevated again and when they ran further testing the tests for lupus and connective tissue diseases are elevated also. The normal range for the tests are 100-120 and the lupus test was 125 and connective tissue disease 145. I'm working on following up with a rheumatologist and hopefully will be able to get in yet this week. I guess I'm just kinda nervous! I'm hoping that even though they're high it doesn't necessarily mean I have these diseases. I have muscle pain and weakness, but not joint pain, and I don't have that rash on the face that seems to go with lupus. Do you have to have joint pain or the rash to have lupus? Anyone know if it's possible to test high but not have the disease?

[Marilyn R]

Hi Suzi,

I've explored this topic quite a bit, because I was referred to a rheumy about six months after going gluten-free. I've been to multiple specialists and had more blood draws than I can believe. I showed up positive for Mixed Connective Tissue Disease based on my blood test results about six months after going gluten-free.

I don't think I have that Autoimmune disease. I'm pretty sure I would have gotten it or Multiple Sclerosis (my first cousin sadly died from it) if I hadn't made the choice to go gluten-free.

I'm not giving medical advice, but I think you have to have the rash to have Lupus. I have 3 close friends with Lupus. Two of them won't go gluten-free, and I respect their decisions. One is not doing well at all. She blames it on living in St. Louis close to the Monsanto plant. Another went gluten-free and raw food. She had the rash and was off the charts with blood tests for Lupus, and she's doing very well now. She pursued getting her masters degree after going gluten-free and raw, and achieved her Master's while working full time. Her bloodwork is within normal limits now too, and she doesn't have the rash.

The third friend refuses to go gluten-free, and she's 30 years younger than the first friend, 10 years younger than the second. She swears she goes into remission when she's pregnant, and she's due to deliver her second baby any time soon.

I respect each friend's decision as to the route they choose to take.

I had a lot of really strange blood tests when I first went gluten-free, and the medical community had me really freaked out by calling me with referrals to different specialists. All of this added to my anxiety level, which doesn't help anything with an autoimmune disease.

What I wish is that I'd given myself a full year for the diet before agreeing to different blood tests and specialist referrals, and to thank my lucky stars that even though the diet is restrictive and some other food issues emerge temporarily, I by goodness am lucky to have figured it out.

So take a deep breath, relax, if your experience is similar to mine you are going to have a few weird blood draws.

By the way, I finally stuck my heels in the dirt and refused to be referred to a pulmonologist when my primary care doctor called me and said I needed to see a pulmonologist because my blood test results showed I had sarcidosis. After researching that, I finally said "Enough!" (I don't have that.)

I don't know if you're as old as me (I'm in my 50's), but it took me quite awhile to work through other food intolerances and to heal.

For me, I had to give up dairy, soy, corn, all processed foods. And I couldn't do certified gluten-free oats for awhile, will never eat quinoa again because it hurt me so bad. I'm feeling better than I have in years now, and I'm enjoying soy, corn, some processed foods, and oats. That was my journey, your's could be different, but please know I wish you the best. Good luck!

[Marilyn R]

Oops, I still don't do soy, just to clarify.

[Gemini]

Hi Suzi,

I've explored this topic quite a bit, because I was referred to a rheumy about six months after going gluten-free. I've been to multiple specialists and had more blood draws than I can believe. I showed up positive for Mixed Connective Tissue Disease based on my blood test results about six months after going gluten-free.

I don't think I have that Autoimmune disease. I'm pretty sure I would have gotten it or Multiple Sclerosis (my first cousin sadly died from it) if I hadn't made the choice to go gluten-free.

I'm not giving medical advice, but I think you have to have the rash to have Lupus. I have 3 close friends with Lupus. Two of them won't go gluten-free, and I respect their decisions. One is not doing well at all. She blames it on living in St. Louis close to the Monsanto plant. Another went gluten-free and raw food. She had the rash and was off the charts with blood tests for Lupus, and she's doing very well now. She pursued getting her masters degree after going gluten-free and raw, and achieved her Master's while working full time. Her bloodwork is within normal limits now too, and she doesn't have the rash.

The third friend refuses to go gluten-free, and she's 30 years younger than the first friend, 10 years younger than the second. She swears she goes into remission when she's pregnant, and she's due to deliver her second baby any time soon.

I respect each friend's decision as to the route they choose to take.

I had a lot of really strange blood tests when I first went gluten-free, and the medical community had me really freaked out by calling me with referrals to different specialists. All of this added to my anxiety level, which doesn't help anything with an autoimmune disease.

What I wish is that I'd given myself a full year for the diet before agreeing to different blood tests and specialist referrals, and to thank my lucky stars that even though the diet is restrictive and some other food issues emerge temporarily, I by goodness am lucky to have figured it out.

So take a deep breath, relax, if your experience is similar to mine you are going to have a few weird blood draws.

By the way, I finally stuck my heels in the dirt and refused to be referred to a pulmonologist when my primary care doctor called me and said I needed to see a pulmonologist because my blood test results showed I had sarcidosis. After researching that, I finally said "Enough!" (I don't have that.)

I don't know if you're as old as me (I'm in my 50's), but it took me quite awhile to work through other food intolerances and to heal.

For me, I had to give up dairy, soy, corn, all processed foods. And I couldn't do certified gluten-free oats for awhile, will never eat quinoa again because it hurt me so bad. I'm feeling better than I have in years now, and I'm enjoying soy, corn, some processed foods, and oats. That was my journey, your's could be different, but please know I wish you the best. Good luck!

Marilyn...looks like we had almost the same journey! I am also in my 50's and have been gluten free for almost 7 years now. I completely agree about the wonky blood draws. As a Celiac, you will have wonky blood draws so get used to it. It does not mean you have the disease they are testing you for.

A quick background...I have Celiac, Sjogren's, Raynaud's and Hashi's thyroid disease. My ANA and RF are always elevated but are slowly coming down...
s l o w l y coming down the longer I am gluten free. I have absolutely no symptoms of rheumatoid arthritis either. However, I learned from a very good hematologist that anyone with Celiac or multiple autoimmune conditions will not have normal blood work and she made me relax about the whole thing. My PCP, while a good doctor and decent about most things, buys into the "Oh, you're over 50 with Celiac so we have to get paranoid now about your blood tests"! NOT!

I have repeatedly refused to see a Rheumatologist because I'll be damned if the AMA is going monitor me. Quite frankly, I do a better job because I live in this body and know what's normal for me. They really are quite clueless about autoimmune issues....you have to experience it to understand the mechanism well. So, you have given good advice here. Do not become paranoid. If you have a wonky test but no symptoms of the disease, it's highly unlikely you have it. Other autoimmune conditions can throw off other autoimmune tests, especially the connective tissue diseases. I found out that Sjogrens' will throw off the RF test so that explains it as far as I am concerned. Besides, they are all coming down over time but I never thought it would take 7 years. I am a fast healer but I went a long time with undiagnosed Celiac so it is what it is.

[suziq0805]

I do not have celiac, so have not been diagnosed with an autoimmune disease yet. If I understand correctly, gluten sensitivity is not autoimmune. My blood tests were negative...not even borderline, and it was a complete panel. My biopsy was negative- I had numerous samples taken from various locations and had an experienced pathologist reading them. I know it's always possible to miss something, but it seems pretty likely that it's not celiac. So could gluten sensitivity throw the ANA test off? Could it throw off the connective tissue or lupus test?

I don't have the rash that seems to be common in lupus, but I do struggle with headaches and chronic pain and fatigue (but with a toddler in the house is it possible to NOT feel fatigued?). I have muscle pain and weakness and as a musician/music teacher this makes it painful and difficult to do what I want. I've always described my symptoms as having times where I feel decent (not awesome, but tolerable) and times where the symptoms are flaring up more. I've given up many music-related activities just so I don't live in so much pain. I'm not as bad as I was a few years ago but I've really been limiting how much music I play. At its worst if I played music for too long (which in all honestly wasn't THAT long of time) or played almost every day I ended up with fingers that would begin to be hard to move. My arms felt so weak that they felt so heavy to hold up to conduct rehearsals. Holding a pen to take notes in college was painful some days. When I originally was diagnosed with an overuse injury it made sense until it got to this point and when the symptoms began to "spread" to both arms, neck and knee it seemed like more than an overuse injury I thought. Even today if I play piano for 30 minutes I may pay for it with pain for a few days or more. I don't think I have a lot of joint issues, but when this pain originally began it was in my wrist more in my joint area. I have a rheumatology appointment tomorrow morning so hopefully will get some answers. My original GI sent me there a couple months ago to get bloodwork run but she didn't feel it was needed, so I'm really just hoping she takes a serious look at everything and doesn't just think I'm some crazy person.

[Marilyn R]

I don't feel qualified to answer your question. But were you following a low carb diet before your celiac panel and biopsy because you somehow figured out that you felt better? Or were you eating the equivalent of six pieces of wheat bread a day? You might find this article interesting... http://www.celiac.co...-EdD/Page1.html

My neurological symptoms took about a year to improve. You're younger, so it might not take as long. I didn't have pain like you describe, mine was neurpathy, "pins and needles" sensations. My pain went from an 8 on a scale of 1-10 to a 2 or 3 in a year. It's down to a 1 now at 22 months. But my feet "fall asleep" fairly regularly. I have permanent nerve and muscle damage from gluten, and I'm undiagnosed. My celiac panel was negative and so was my biopsy.

The fatigue gets better too. It takes awhile. I can't imagine having to contend with a toddler! I went from a fairly active lifestyle to almost reclusive with this condition. You don't have that option. I went from an avid gardener to someone with a landscape of struggling or dead/dying plants.

Please remember Gemini's post, "I have Celiac, Sjogren's, Raynaud's and Hashi's thyroid disease. My ANA and RF are always elevated but are slowly coming down...
s l o w l y coming down the longer I am gluten free. I have absolutely no symptoms of rheumatoid arthritis either. However, I learned from a very good hematologist that anyone with Celiac or multiple autoimmune conditions will not have normal blood work and she made me relax about the whole thing. My PCP, while a good doctor and decent about most things, buys into the "Oh, you're over 50 with Celiac so we have to get paranoid now about your blood tests"! NOT!

I think the "good" blood tests for you now are checking B-12, Vitamin D, (common defficiency with us), thyroid panel and a basic. Save the ANA's and RF for later. And give it some time.

Of course, it's always best to follow the advice of a medical professional, and I'm certainly not in that category.

[suziq0805]

I don't feel qualified to answer your question. But were you following a low carb diet before your celiac panel and biopsy because you somehow figured out that you felt better? Or were you eating the equivalent of six pieces of wheat bread a day? You might find this article interesting... http://www.celiac.co...-EdD/Page1.html

My neurological symptoms took about a year to improve. You're younger, so it might not take as long. I didn't have pain like you describe, mine was neurpathy, "pins and needles" sensations. My pain went from an 8 on a scale of 1-10 to a 2 or 3 in a year. It's down to a 1 now at 22 months. But my feet "fall asleep" fairly regularly. I have permanent nerve and muscle damage from gluten, and I'm undiagnosed. My celiac panel was negative and so was my biopsy.

The fatigue gets better too. It takes awhile. I can't imagine having to contend with a toddler! I went from a fairly active lifestyle to almost reclusive with this condition. You don't have that option. I went from an avid gardener to someone with a landscape of struggling or dead/dying plants.

Please remember Gemini's post, "I have Celiac, Sjogren's, Raynaud's and Hashi's thyroid disease. My ANA and RF are always elevated but are slowly coming down...
s l o w l y coming down the longer I am gluten free. I have absolutely no symptoms of rheumatoid arthritis either. However, I learned from a very good hematologist that anyone with Celiac or multiple autoimmune conditions will not have normal blood work and she made me relax about the whole thing. My PCP, while a good doctor and decent about most things, buys into the "Oh, you're over 50 with Celiac so we have to get paranoid now about your blood tests"! NOT!

I think the "good" blood tests for you now are checking B-12, Vitamin D, (common defficiency with us), thyroid panel and a basic. Save the ANA's and RF for later. And give it some time.

Of course, it's always best to follow the advice of a medical professional, and I'm certainly not in that category.

I was on a regular diet prior to the celiac blood panel. After that I went gluten free because I was sick of doctors. But a couple months later decided that since my issues are muscular/neurological I wanted a definate answer in case I didn't see a lot of improvement quickly. So I went on a 3 month gluten challenge- I tried to stick to the 6 slices per day for 3 months.

I'll ask the rheumatologist tomorrow whether a diet change could affect the test results. She doesn't seem to be one to order excessive testing so I don't think she'll order any tests if she doesn't see a need for it.

[suziq0805]

My appointment today went really well I think. My labs are different than they were a few years ago- new things are being detected. But she said they didn't quite add up to her because some of the elevated tests didn't match up with my symptoms well. I did test positive for 1 antibody related to Sjogren's Syndrome, but she said it's not common to have one antibody for that without the other. So she is wondering if it's a false positive, but given all the issues I have she wants to run more tests to see if anything else shows up. So they took a bunch more blood, urine sample, ordered an EKG and a lung test. I did ask about whether beginning a gluten-free diet could affect the test results and she didn't think so, but the way she said it I could tell she was thinking about whether that was a possibility (she didn't just brush the idea off, she thought about it), and it sounded like she would look into it. So I am getting a bunch more tests run, but I really don't get the impression that she's jumping into any diagnosis.

[Marilyn R]

You definitely did all the right things. I admire that! Keep us posted...best wishes to you.

[UKGail]

I have trod your path too. Of the rheumatological antibody, thyroid and celiac tests I had done last year, the only adverse findings were very high ESR, high IgM anti-cardiolipin, borderline high TSH, borderline low RBC, and a couple of other very minor funnies. The rheumatologist, who was a lupus specialist, wasn't minded to diagnose me with any autoimmune condition, and he thought that it wouldn't be celiac because of the negative antibodies (TTG was well below the reference range).

Because of a strong family history of celiac disease, he asked me to trial a strict gluten free diet. Within 2 months the blood abnormalities had more or less sorted themselves out, and the photosensitive rashes, hives, headaches, and joint aches and pains, and abdominal troubles had also either resolved or markedly improved. The rheumatologist was accepting of this, but quite bemused. I am pretty sure the idea that gluten could influence the development of his specialist condition was not something he had any experience of. He said I didn't need to go back, unless things took a turn for the worse, but that he would like to know if I managed to get any sort of medical confirmation of a gluten sensitivity. As we all know, this is unlikely now that I am happy being on a gluten free diet.

By the way, I developed a photosensitive rash and hives at the same time as a significant worsening of what had previously only been minor or intermittent abdominal troubles, and it was after the original blood draws. My guess is that I was perhaps on the slippery slope to developing celiac and maybe also lupus or similar, but caught it quickly allowing a fairly rapid recovery. I still have digestive, fatigue and brain fog issues though, so it isn't entirely a bed of roses.

I hope the gluten free diet helps you too, but don't be surprised at your rheumatologist not accepting the connection.

[Marilyn R]

Thanks for your post UKGail, I find it very interesting because I've suffered from hives since I was in my teens, and haven't broken out in hives once since I went gluten-free. (Interestingly, I'd already figured out that anti-histimines were the source of the hives.) If I take an over the counter cold medication, I'll break out in welts all over my chest, back and arms.

I know that bemused attitude from your Rheumatologist. My Neurologist has it. She wants me to have genetic testing to help "diagnose" me. I can't see the point. My mother had celiac disease and I don't have children. It isn't a question for me, going gluten-free is an answer.

Do you mind sharing your age?

[UKGail]

Hi Marilyn

I'm 47. I first fell ill in my early twenties. The docs just thought it was post-viral fatigue, but the symptoms were much more extensive than simple tiredness, and were pretty much identical to what I went through last year, apart from the hives which were new. After muddling through my twenties and thirties, I started getting more severe problems when I was 44.

I have always been prone to a bit of ezcema, but nothing bad. However my skin has always been sensitive to touch. If I scratch anywhere I come up in welts. That hasn't changed since I have been gluten free.

My face was burning really badly last summer (a different issue to the hives which came and went, and have now seem to have gone for good). It has pretty much gone away now, but returns in a mild form if I do something to upset my digestion. This could be a reaction to trace gluten, but also seems to happen if I challenge my digestive system by eating a large meal with a high level of fat. It's a bit warm this morning as I worked late yesterday evening, so didn't eat until very late last night, which is never a good idea. My mother also has something like this. Her doctor says it is rosacea, but she has figured out it is controlled by being gluten lite and dairy free. She has never tested for celiac, as she is otherwise quite well.

That's weird re your reaction to anti-histamines. One of my problems has been bad sinus pain and a stuffy nose since last year, and it wasn't improving with the change in diet. Another poster recently explained how zantac (an H2 anti-histamine) was helping with her severe wheat allergy. I thought I would give it a try, and sure enough it helped significantly with the drippy nose, to the point where I now only need to take a dose occasionally. A steriod nasal spray has helped reduce the sinus pain, and I still need to take this daily. I'll have to see my GP about this before too much longer, as I don't think you are supposed to self-medicate with this on a long term basis. I probably ought to see about food allergy testing, as I suspect this might be why I still have some problems, and I also seem to react to airborne gluten (10 days sick after going into a hot bagel shop to buy a hot bacon bagel for my daughter - not my best decision!)

Genetic testing has also been recommended to me to try to help with a diagnosis. However, whilst I have no major objection, I don't see the point of making a trip to the doctor specially for this. Half my mother's family are diagnosed celiacs, so I have always taken for granted that we are all in one of the at risk groups.

[weluvgators]

We have had some issues with my DD that landed us in rheumatology - involving fatigue, joint pain, weakness, hives, burning skin rashes, elevated sed rate . . . she has hypermobile joints and had lots of headaches, restless legs, leg and arm pain before we got our diets much cleaner of gluten. Long story, but in the end, some of the more effective things for her were identifying her h.pylori infection that was ravaging her gut and making b12 absorption problematic. Treating the h.pylori and getting her b12 supplementation seemed to be of great benefit to her. Her b12 blood test was fine, but the urine test showed that she was dumping large quantities (I haven't researched this myself extensively, we just found doctors that seemed to be better at improving our situation as opposed to observing our situation). We also got her some physical and occupational therapy to help her.

We still get hives and burning rashes with environmental gluten exposure (acute we can navigate, chronic exposure leads to chronic problems), but the other issues (coordination, weakness, fatigue, joint pain - sed rate had lowered) were much improved / relieved. We use Zyrtec/ceterizine as our primary relief anti-histamine. While on Benadryl, our hiving continued. Benadryl is our backup to Zyrtec . . . and i don't know if it helps us or not. We try not to be in a position of needing it. It sucks when you end up broken out in hives in a medical crisis because it seemed that all of the "bad reactions to watch for" when they are doing interventions involve hives . . . like when you are fully broken out in hives, how will you know you are breaking out worse . . . actually she would break out worse, and it just really sucked! But it was really stressful to constantly monitor full body hives.

Marilyn - would you mind sharing if it is all antihistamines, or which ones in particular, cause you hiving issues?

[UKGail]

weluvgators - wow, that is very interesting, thank you for sharing your story. The symptoms you list for your daughter mirror mine, including the hypermobile joints, but muscle cramps for me rather than restless legs. In my twenties I hardly had an uninterrupted night's sleep due to calf muscle cramps in the early hours.

I'm going to give what you said some thought, as it has strong parallels to my story. I have had peptic ulcer/stomach acid issues on and off since I first fell ill in my twenties, and it had been worsening. The symptoms vanished within a week or two of going gluten free, and recur in a mild form for a few days with exposure to trace gluten.

I haven't regularly supplemented with B12, as I wanted to focus on getting a clean and steady diet first, before adding in supplements with multiple delivery ingredients, and have only just started adding in calcium, magnesium, D, and probiotics. I'll add in the B group now too. I hadn't focussed on the B group as my iron level, although lowish, was within the reference range. My great-grandmother had pernicious anemia, and it is her grandchildren and great-grandchildren who are riddled with celiac. We suspect it was also present in at least 2 of her 4 children too, but never diagnosed while they were living.

I looked up zyrtec, and it seems it is regarded as helpful with inflammation of the airways, and calming down itchy skin, both of which are problems for me, so I shall give this a try.

Would you mind sharing whether your daughter, like me, also had negative tests for celiac antibodies and biopsy?
It sounds like you have a good handle on her condition now, but it must be hard work for you to manage it. I am so bored of cooking and trying to keep the risk of cross-contamination from our gluten eaters to a minimum.

[Marilyn R]

Marilyn - would you mind sharing if it is all antihistamines, or which ones in particular, cause you hiving issues?


Good news, I think, Zyrtec is the only antiistimine that didn't make me break out in hives before I went gluten-free. I by gosh haven't had to take an antihistimine since then, almost two years.

And the steroid nasal sprays always helped me, never seemed to produce a side effect. (Haven't used those in quite awhile either, but suffer from constant nasal drip, so I may ask for a prescription on my next doctor's visit.)

I have new onset skin issues though, scaly and itchy on three places on my face...two from spots where I had a dermatologist biopsy me 1 and 2 years ago consequetively and on my left lower ear lobe. I think it's eczema. Thanks for sharing your stories, everyone, it helps so much in trying to find the right road. xoxo