This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
Other weird symptoms... I often see vision trails. They aren't very distracting and only last an instant, but this seems like a strange one to me. I also see very fast moving tiny spots... different from floaters in that they move (shoot through my vision) while my eyes are still. I told this to the eye doctor and she looked at me like I'm insane and said my eyes are perfectly healthy, which I do believe... so I think this would have to be something neurological. But of course I can't find anything linking this sort of thing to celiac disease.
I had my blood pressure taken yesterday and it was normal, not low, which in light of symptoms like these concerns me even more.
Thanks for this suggestion! I've thought that there's a possibility of something being 'off' in terms of my blood pressure regulation. Sometimes it's so weird... if I stand up and sit back down in the span of a minute, I see stars for maybe 15 seconds... they almost look like fireflies. There is nothing wrong with my eyes that can explain this (I also get starbursts and sensitivity to light which the eye doctor blames on big pupils!)... and combined with the dizziness it's very distracting on a daily basis. My blood pressure is always low to normal. I will do this test soon and maybe it will shed some light or at least rule something like this out!
Wow, I've never heard of this but I have had those symptoms for a long time, and lately in addition my skin has been very irritated and itchy, fairly consistently. It seems to have gotten worse after my last allergy shot about a month ago, and normally I would only experience something like that for a few days at the injection site. I'm going to contact my allergist and ask if there is any testing they can do, because I don't want to continue with the immunotherapy if it is making a problem like this worse! I've also decided that I need to keep a food journal to see if there are patterns to the itchiness and brain fog in particular, depending on what I eat.
I'm sure it is possible that I've been glutened once or twice since going gluten-free, but it's tough to know because I generally don't have any gastro symptoms that would point to any food in particular, and I haven't really changed my diet since my antibody test came back negative. I'm 32 and still having very regular periods so I don't think it's anything hormonal. I could certainly be wrong though!
I've been wary of oats because of the cross-contamination during processing issue so I definitely avoid them as well.
I'm going to do some more research and start to carefully document what I am eating. Hopefully this will lead me in some direction in terms of talking to the rheumatologist next month. Right now I feel very frustrated and aimless.
Please feel free to post to this thread again if something else occurs to any you. Thanks again... I do appreciate it!
An update to this, and looking for insight from people who may have dealt with something similar.
I went to a neurologist shortly after writing this post. She claimed that the weird skin sensations were paresthesias caused solely by celiac. Being that these sensations began after my diagnosis and even after my TTG antibodies normalized, I still find this hard to believe. She also dismissed my dizziness when standing as anything significant and claimed it must be due to dehydration (nevermind the fact that no evidence of dehydration has ever been found on bloodwork). She gave me a Rx for nortriptyline for the paresthesias and referred me to a sleep specialist claiming that the brain fog could be from undiagnosed narcolepsy or chronic fatigue. In short, she found nothing wrong in the very brief neuro exam (pushing and pulling on limbs, pricking with a pin, repeating words, taking 2 steps, etc) and didn't do any imaging.
Sleep doctor basically asked a million questions and then said she would not do a sleep study unless I get 9+ hours of sleep per night for a solid month, which is not going to happen in a million years. It is worth noting the fact that prior to the last few years, I existed as a healthy adult getting about 7hrs per night, and when I get 8+ consistently, I find it harder and harder to actually fall asleep. Although I hardly feel energetic, I wouldn't say that debilitating fatigue is what I am dealing with.
Both of these visits occurred in fall/early winter. Over the course of the winter I have been feeling increasingly worse, and most disturbingly more brain fogged and out of it than ever. I have also developed strange rashes and get hives/itchiness anywhere from head to toe on a daily basis, my skin is typically pretty reactive and irritated.
Last week I went back to my primary care doctor completely at the end of my rope. I feel so out of it that it is affecting my work, concentration, and personal life. Can't concentrate on conversations, can't read books (eyes just move over the words and nothing is retained), routinely mess up when writing by hand (words/letters out of order)... all very frustrating and scary. Every time I try to explain this to a doctor, I of course get emotional and this is misinterpreted as simple depression (the same thing happened a few years ago when in the span of a year, I lost half my hair, was nodding off behind the wheel, had swollen joints, rashes, low grade fever, high white blood cells, etc. Nothing meaningful was every pursued and instead I was put on huge doses of antidepressants until the symptoms gradually improved on their own, but I don't feel I've been normal since).
Doctor now wants me to go on antianxiety medication and has referred me to a rheumatologist. Paresthesias persist, as well as dizziness when standing, flashing/streaks of light in my peripheral vision, itchiness all over, broken blood vessels on feet and legs (basically I scratch an itch and it is an instant bruise), twitching/tingling in face, and the brain fog which is worst of all. Each day there are periods of time where I feel like I am often not even occupying my body... that is how out of it I feel.
Doctor ran a ton of blood work (ANA, CRP, sed rate, CBC) all of which she claims is normal. I am still vitamin D deficient even though I've been supplementing for 4 years. B12 is at 639, so not deficient whatsoever. She says that celiac could still be to blame for these symptoms, but I am not encouraged by the fact that the brain fog/neuro symptoms appeared after my antibodies normalized, and are only worsening. I have absolutely no clue how I could be exposed to gluten (I don't keep gluten at home, don't eat out, only eat certified gluten-free processed foods and even limit those!) and my negative blood tests also indicate that this is not the case.
Do any of you have any experiences that can shed some light on this? My rheumatologist appt is not for another month, and I honestly do not have any hope that they will have any more insight than the other 3 doctors I have seen. But I have a very hard time accepting that this is normal and that I have to live with feeling this way forever.
I agree with those above who say that it is valuable to get a diagnosis if it is at all feasible. I also wanted to add that if you do suffer from dermatitis herpetiformis, you likely would not have to have an endoscopy to get a diagnosis - with DH they can simply biopsy the skin. I haven't had that done myself, but I have to think that it is less expensive (and less invasive) than an intestinal biopsy.
Also, getting an official diagnosis can be beneficial in dealing with insurance (for instance, if they refuse to cover specific testing/treatment if complications arise down the road).
Ugh, I just drank a single serve carton of their 'Mocha Latte Almond Milk" and started feeling weird pretty quickly. The product claims it is gluten free (and the company claims their gluten free products test to below 10ppm), so this is pretty upsetting.
I've developed some neuropathy as well. I'd heard that celiac can have neurological manifestations and I believe this is true for me, because brain fog and coordination issues were among the first of my symptoms. My neuropathy comes and goes and mostly feels like something is crawling on me, it is not painful but pretty distracting. No numbness, but there are waves of tingling here and there. For me what is most concerning is that the neuropathy has developed months after my diagnosis and even after a follow up TTG antibody test came back negative/normal.
I was concerned about neurological diseases like MS, so I went to a neurologist, who did a full exam on me (no MRI or imaging, just reflex, strength, and balance testing, as well as checking sensation) and didn't find anything abnormal. She said that a lot of doctors (especially neurologists) don't quite understand how wide-ranging the problems created by celiac can be. She gave me a prescription for a medication that is used off-label to treat neuropathy (typically in people with MS, diabetes, etc). I've only been taking it a week or so, so it's too early to say whether it will help or not. I'm hoping that the neuropathy doesn't worsen and that eventually it goes away. If it does worsen, I'm going to push for an MRI.
According the to U of Chicago Celiac Center, it's possible for neurological problems to appear even after being gluten-free for some time, so I am hoping that my (and your!) vigilance with the diet will begin to pay off soon. I know how you feel in that continuing to feel crappy even after going gluten-free is really bad for your outlook and confidence because you constantly feel like you're not doing enough or being careful enough. Personally, I feel like every health problem I've had is rearing its head now that I have gluten under control.
I'm currently struggling with a lot of the same issues: numbness, tingling, brain fog, feeling uncoordinated... feeling worse after being on the diet for almost 5 months. My last TTG test was negative, and my household is gluten free, so I suspect that my issues are not due to continued gluten exposure (at least not in quantities high enough to affect those antibodies). I'm currently looking for a neurologist that is versed in gluten issues. I found this on the U of C Celiac Center FAQ, and thought it might be of interest in this discussion:
Is it possible to have peripheral neurological symptoms develop after being a on a gluten free diet for almost a year?
Unfortunately, yes. Neurological signs/symptoms may appear even after the diet is started, and in some cases may not be influenced by the diet because they’ve been brewing in your body for quite a long time.
I'm so thankful to have the support of this community and all the resources and help it brings. I was diagnosed with celiac disease back in the beginning of May. I've been strictly gluten free ever since and a follow up test on my TTG levels revealed that they are negative, so I know I'm doing well in adhering to the diet and avoiding cross contamination.
I've had to be patient with the resolution of a number of my symptoms (basically the only thing that's gone pretty much back to normal is my digestion) - hair loss, joint pain, vertigo. My doctor doesn't seem to think these issues are related to celiac but I find that hard to believe. One issue that I've been experiencing isn't a huge problem for me but very annoying and distracting when it happens. I have this strange sensation across a small area on one side of my back. It feels like my skin is crawling, or like something is touching me very lightly. I've read a little about neuropathy and have experienced it mildly in different areas (toes, tops of hands), but I wasn't sure if it's possible for celiac to cause nerve issues that would affect an area like the back. My B12 and vitamin D levels are still somewhat low, but every other test comes back normal (my thyroid is functioning normally and thyroid antibodies are negative).
Has anyone else experienced this, or are any of you familiar with this? Any help would be awesome!
Thanks so much to those of you who responded a few months ago!
I just figured I'd provide an update. I've been gluten free since my biopsy and many of my symptoms have resolved, especially the digestive issues I was having. I'm still working on bringing up vitamin levels, but I got some great news a few days ago. A follow up test on my TTG levels showed results in the negative range! I've been super vigilant about following the diet and avoiding cross-contamination, and it's great to know that all that work is helping with my healing.
Thanks again, it's so great to be able to look to this resource and get help and advice from those in the same boat!
I just wanted to revive this thread to inquire if anyone has been able to visit Senza yet. I'd love to hear your experiences. According to Yelp, many people, even non-gluten-intolerant or celiac folks are loving this place! They now offer baked goods from 9-noon T-F as well so I plan to stop by there for a few items once my schedule frees up during the day. Also, I'm a vegetarian and I checked with them regarding veggie options, and they said they'd be happy to provide a vegetarian option for each course and can even do a 9-course vegetarian tasting menu with 24 hours notice. That's probably a little fancy for me but it's good that they offer it.
I'm planning to head there next month for my birthday. It will most likely be my first meal out since I've gone gluten free. I'll definitely update once I check them out!
Yes, I just checked the report and the samples were 0.1-0.3 cm in size, and with several yards of small intestine that is indeed a tiny portion represented. At this point I guess I just have to proceed as celiac is the only problem and reevaluate if my symptoms persist. I'm not looking for a reason to deny celiac, rather I'm relieved to know that I've figured out what has been wrong for so long and now have the opportunity to heal. I'm just very scared that something else is amiss, but I suspect that once I start to feel better and my symptoms start to fade, I won't need much convincing.
Thanks so much, everyone! I'm so happy to have this forum and all its knowledge and support behind me as I start this healing process.
I'd just like to get the opinions of some people who have dealt with celiac. I have been feeling off for years, the first complaint that might be celiac related that I went to the doctor for was 7 or 8 years ago - brain fog, feeling out of it. This persisted but a few years ago, I had a total physical meltdown and developed such extreme fatigue that my life became absurdly difficult. I would fall asleep on the way to and from work, standing up, you name it. Weekends were spent sleeping 12-14 hrs a day. I was tested for lupus and thyroid issues as well as general blood work but everything came back normal aside from a constant low grade fever and slightly high white blood cells. In addition to the fatigue, I lost half of my hair, had strange rashes, petechaie and deep fingernail ridges. I was given antidepressants and everything was chalked up to anxiety/depression.
Energy levels gradually improved but on a whim I decided to add a vitamin D test to the panel I have done through my workplace every year. My vitamin D levels were barely detectable. My doctor has had me supplementing with 50,000 units weekly and the highest level I've reached has been 18.
This past fall, I began experiencing chronic diarrhea which has now become a daily thing. I can't remember the last time I had a normal bowel movement. However, there is no pain or blood.
I had to switch to a new primary care doctor and the detailed history she took combined with the diarrhea lead her to test for celiac. The test for IGA deficiency came back normal and my TTG levels were 17 on a scale where anything over 10 is considered positive. I was told to continue eating gluten and come back for a biopsy. After the procedure, the doctor noted that she saw areas of nodularity as well as flattening in the lining of the duodenum which she said could indicate celiac. Here is the report from pathology, indicating that the villi are intact but that intraepithelial lymphocytosis was found:
A) Duodenal biopsy:
- Duodenal mucosa including Brunner glands showing focally increased
lymphocytosis not associated with villous atrophy, see NOTE.
- No granulomas, ova or parasites, atrophy, chronic or active
inflammatory infiltrates in
lamina propria, or neoplasm identified.
NOTE: The finding of increased increased intraepithelial
lymphocytosis on H&E and CD3 stains on blocks A1 and A2 is not
specific. The lymphocytosis can be seen in association with
gastritis and can also be seen with celiac disease which has been
treated or may represent a less than fully developed expression of
celiac disease in an area of minimal involvement. Clinical
correlation is suggested and correlation is serologic testing if
this is available.
So, my doctor is thinking it's 'early celiac' and has told me to switch to a gluten free diet (which I have) and see how I feel after a few months. I'm just worried because I thought that TTG would not be positive unless there's a fair amount of damage, so I'm concerned that the damage is elsewhere or not due to celiac. Is it possible that the changes that the pathologist found could cause the positive TTG, diarrhea and other issues I'm experiencing? I'm just concerned because it seems like my symptoms and blood test results are out of proportion with the pathologists findings. I've expressed this concern to my doctor and she stated that since celiac is so patchy, there is often less damage indicated in the biopsy than the blood test since they can miss more affected areas.
What do you all think? Would you pursue any additional testing at this point in addition to going gluten free? Thanks in advance for any advice or reflection you can offer.