Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Can Celiac Do This?
0

16 posts in this topic

I'm actually nervous about writing this, because I can't seem to be coherent anymore. This is getting ridiculous.

In October, I started a med called Savella for fibromyalgia. My pain went down to almost nothing, but I started having serious problems with D and nausea, plus my heart rate and blood pressure went up. I accidentally went gluten free close to the beginning of my trial with Savella. The D stayed, but while I was on a low-carb diet [fitness program] for two weeks, my energy started to increase a lot. I thought it was the Savella, but once I started back on a regular diet, my energy level dropped off to nothing again.

I finally had to stop the Savella because of side effects, but the D stayed even after my heart related symptoms went away. I'd been researching Celiac by this point, and decided to go gluten free on purpose.

The D was gone within two days, but my energy didn't get better. On December 23rd, after doing more research [here...have I mentioned that you guys are wonderful?] I decided to start back on gluten in the hopes of getting my antibodies up if I'm making them.

I'm currently waiting to set up an appointment with my doctor to have a celiac panel done. Here's my question, though [sorry if I'm rambling]

My symptoms have multiplied since going back on gluten. Can a two week gluten-free trial cause such a weird reaction? My temperature has been at 99.6 since I started back on gluten. Normal for me is in the 98 range, but usually below 98.6.

My heart rate has been wonky [a little high, lots of palpitations, and it feels like it's beating 'hard' right after I eat. Usually lasts a couple of hours].

The D came back within a week or so, and I've gotten back to having to go 5-6 times a day.

The thing that's driving me nuts, though, is I can't type anymore [ridiculous typos...like I've forgotten where the letters are] and yesterday, I was measuring my kids' weight and height, and in the time it took me to measure them, walk four feet to my desk, and write down the numbers, I'd forgotten what the measurement was!

I had to walk back and forth from the wall to my desk three or four times for each number.

I've noticed that my ability to remember stuff has gotten a lot worse since I was in my late teens to early 20s, but this is a new low. I used to have a near perfect memory, and could memorize an entire page in about 15 minutes.

Also, I remembered [miraculously] that about five years ago, I had another bout of unexplained, chronic D that lasted three or four months and went away on its own. Can Celiac cause GI symptoms and then it just stops after a period of time? My doctor never did any blood work the first time [he was old school] so I have no idea what caused it, and I don't remember changing anything diet-wise at that time, but I do know that after that, I started losing weight without trying.

I thought I was doing something different by chewing my food thoroughly, but I lost 30 pounds without doing any exercise. It took about six months to lose the weight, and I got down to the weight I wanted and then stopped losing, so maybe I did cause that by eating differently, but part of me wonders if it was gluten intolerance.

I feel like absolute dog poo. Can't think, can't eat [nausea is back, too], can't leave the house because of D [immodium helps some with that, though] muscle pain is out of control, and no matter what meds I take, my temp stays at 99.5-99.6. I'm cold and exhausted and depressed and grumpy, which is not fun since I have three kids and a quadriplegic brother to take care of. Oh yeah, I have a fever blister that seems to be trying to conquer my entire chin, itchy skin [but no blisters that I can see. When I scratch, hives seem to pop up, but they don't stay...there are some bumps, but I can't tell if they're from scratching or just coming on their own].

Can two weeks gluten free cause symptoms to get this out of hand? I'm trying to hang on for the few days that are left until I can get tested, but if this is really what's going on, I'm really REALLY beginning to understand why so many of you refuse to go back to gluten no matter what.

I plan on going gluten free regardless of my test results, because I know it will more than likely take care of my D. I have another question about the memory loss, though. Can Celiac cause it, first of all, and if it can, is it possible for my memory recover? I can't even begin to tell you just how much I miss my brain.

Thanks for reading, and for any help you might have to offer.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Your story could have been written by many of us here on the Forum. (All those on the Forum who felt like dog poo, please raise your hands!) And, yes, the symptoms can wax and wane throughout one's lifetime. Gluten acts like a neurotoxin on both people with celiac and those who are simply sensitive (usually because they have leaky gut), which is why memory can be affected in so many of us. Also, it's not uncommon to be ultra-sensitive to gluten after removing it from your diet and then adding it back in. Sometimes that's the determining factor for those who have been on the fence about going on a permanent gluten-free diet--their socks got blown off by the symptoms when they resumed eating gluten (yep, "dog poo syndrome").

However, in addition to symptoms of celiac, I also wonder if you might have Hashimoto's thyroiditis. The memory problems, fatigue, muscle aches, etc., are all indicative of a thyroid condition, which is common with people who have celiac. Please have your doctor test you for it. Also, you might ask for iron and ferritin tests--whenever my anemia gets really bad, I can't type at all because I make too many typos.

With regard to your rash, I notice that you described it as starting as a fever blister, which is a form of the Herpes Virus. The skin condition that many of us celiacs get is called Dermatitis Herpetiformis because it is rash that is herpes-like (itches, stings, and burns). You may, in fact, have this condition....or perhaps you have a zinc deficiency from celiac that is causing the bumps. Whatever the condition is, I suspect that a gluten-free diet might just help clear it up!

I hope you start feeling better soon!

1

Share this post


Link to post
Share on other sites

Thank you for taking the time to answer me. I know you guys get tons of questions each day, and the fact that someone answers almost every one is really amazing.

I've had my thyroid checked several times since my symptoms started getting really bad, and they've always come back within 'normal' range, which is so large that really it kinda means nothing.

I called my doctor today, and her nurse [who is always very kind and has always listened to me ramble on the phone before today] told me the 'best' way to test for celiac is scope and biopsy, then she said there were blood tests that might help diagnose [and mentioned Anti-Gliadin IgA].

I told her about the celiac panel Mushroom listed on another post the other day, and she just said she'd talk to the doctor and see what she wanted to do. I even explained why total serum IgA was important, and she just repeated that she'd talk to the doctor...so tomorrow, I go in to get God only knows which tests and just hope something comes back positive.

I feel a little crazy, because I actually hope it is Celiac. At least then I'll have a cause for all this crap I've been dealing with and a way to fix it [barring permanent damage]. So much of this is so freaking random that if I had something to treat every symptoms I have, I'd be downing 30 pills a day.

I've had a fibro diagnosis for a few years now, and what I've learned is that it's complete trial and error to treat. You just keep trying random meds to see if they help. No one knows what causes it, or even how it works, so there's no real treatment. Frankly, I don't have enough energy to go back to the doctor every month or two and keep trying to find something else that might help.

Celiac isn't fun, I know, and gluten is in just about everything, but at least I'll know what my enemy is and I can fight it. I'm just so incredibly tired of watching myself slowly becoming more and more sick and being utterly helpless to do anything about it.

Sheesh. I'm usually not such a whiner. I was just really bummed when I got off the phone with the nurse today. They're usually great about helping me out with whatever I need, and I felt like I got the brush off. Hopefully she wrote down the list I gave her and I'll get a nice surprise when they start filling vials tomorrow.

Thanks again for all your help, and for listening to me whine a little. :(

0

Share this post


Link to post
Share on other sites

Don't worry--none of us here on the Forum would think that you're whining. Believe me, we've all felt like you sometime in our lives. Many of us went for years with horrible symptoms that doctors told us were all in our heads. I hope that whatever the test results are, you will still go gluten free. My muscles, tendons, and joints were a mess until I went gluten free--one orthopedist actually thought I had muscular dystrophy because of how rigid my muscles were. Since going gluten free in 2004, almost ALL of my symptoms have been alleviated, and--except when I'm glutened--I no longer have problems like fibromyalgia or tendonitis. There IS hope! Please let us know how your tests turn out, and we'll use our collective heads to try to help you further.

0

Share this post


Link to post
Share on other sites

Don't worry--none of us here on the Forum would think that you're whining. Believe me, we've all felt like you sometime in our lives. Many of us went for years with horrible symptoms that doctors told us were all in our heads. I hope that whatever the test results are, you will still go gluten free. My muscles, tendons, and joints were a mess until I went gluten free--one orthopedist actually thought I had muscular dystrophy because of how rigid my muscles were. Since going gluten free in 2004, almost ALL of my symptoms have been alleviated, and--except when I'm glutened--I no longer have problems like fibromyalgia or tendonitis. There IS hope! Please let us know how your tests turn out, and we'll use our collective heads to try to help you further.

I agree and could have written this post except they thought I had MS not MD. In addition to celiac I also have a connective tissue symdrome, Ehlers Danlos, so a lot of my joint and muscle problems were attributed to that, fibro and arthritis. Even with brain lesions and flat line electromylograms they still were telling me it 'was all in my head and I wanted to be sick, here have a prozac'. All of my issues have resolved once I was finally diagnosed celiac. The diagnosis was a long time coming for me because I am one of the 20 to 30 percent that have negative blood work. Do try the diet after your testing is done and don't go gluten light until then as you want the best chance possible for a positive test. After you are done with testing give the diet a good strict try for a couple months no matter what the results.

0

Share this post


Link to post
Share on other sites




My doctor ended up ordering the Anti-Gliadin Antibody [a, b whatever that means...maybe IgG and IgA?] and the total serum IgA. At least we'll know if I'm making antibodies at all.

I won't hear anything until the first of next week because she's going to be out of the office again until Monday, but I went ahead and stopped eating gluten yesterday. I figure a week shouldn't screw up my results if they're positive and she decided to do more testing.

Going from gluten-free back to eating gluten was a freaking nightmare. I don't want to have to do that again. Ever.

I'm not sure I'm desperate enough for a diagnosis to knowingly make myself sick again, you know? I feel absolutely awful today, but my lowgrade fever is going down [it was running 99.6 the whole time I was eating gluten again, which isn't a high fever, but it is above normal for me].

I think the thing that kinda slapped me hard was that I got really depressed, really fast. I've struggled with depression since I was about six [way back before they knew kids could even have depression so nothing was ever done]. I hate being so angry and sad and helpless to get out of it.

That was something I noticed this last time I went gluten free was that I was just happy and content for no reason. That's such a rare feeling for me, and this angry person I've become in the past couple of weeks must go!

Thank you so much for your support and for listening to me whine the other day. I can't even tell you how much it means to me to have found this forum. I'm looking forward to getting to know you!

Shelbi

0

Share this post


Link to post
Share on other sites

Gluten is a neurotoxin for some of us. I know what you mean about the depression I struggled with it from childhood myself. Now that overwhelming depression is the first sign I have gotten glutened. Thankfully it now lifts within 24 hours, just in time for the migraine and GI stuff to start. I have been amazed at the difference being gluten free has made in not just my physical but also mental health. Whether you are positive on testing or not it sounds like the gluten free life is going to help you a great deal. I hope your feeling better soon.

0

Share this post


Link to post
Share on other sites

Yeah, I have no doubt that I'm at the very least sensitive or intolerant to gluten. I ransacked my kitchen and got rid of all my gluten-y foods except for one shelf that belongs to my husband [the very top shelf of one of the cabinets where nobody can reach...I figure if he's going to eat that crap in my house, he can work for it. Bwahaahaa!!!]

I was up all night the night after I cleaned out my kitchen with a killer flu bug and I'm just now human enough to type. That gave me a couple of days' worth of clear liquids and a LOT of sleep.

You'll never guess what I dreamed about, though.

The first one I really remember is that I dreamed my husband was bringing stuff like raisin bran and mac-n-cheese into the house and not putting it on 'his' shelf, so I kept eating the gluteny stuff by mistake. I was yelling at him and telling him I didn't care if the shelf was high, he could get a freakin' chair and stick the stuff up there where it goes so I wouldn't keep eating it.

It was crazy, 'cause in the dream, I was really hungry [probably true, since I haven't had any solid food in about two days] so I kept eating the first thing that looked good, and then I'd realize it had gluten in it!

In the second one, I dreamed that we were staying at a friend's house, and in the dream, I was confused and thought we were moving in, so I went through all of her cabinets and threw out all of the gluten-containing foods. No more cream of mushroom or hot dog buns 'cause I chucked 'em.

Then in the dream, they came home, and I realized that we weren't moving in, but were just staying for a visit, so I'd thrown away most of her food, and she was trying to find something to feed her kids, but couldn't, because most of it was in the dump.

The dream ended with me being really embarrassed and offering to give her some money to replace the stuff I'd thrown away, and trying to get my husband and kids rounded up so we could leave as quickly as possible. I'm still a little embarrassed I threw away a bunch of food that didn't belong to me...even if it WAS a dream. :)

Apparently, the flu does strange things to my mind. :rolleyes:

0

Share this post


Link to post
Share on other sites

The doctor's office called and said my results were 'just fine'. She's mailing them to me, though. I'm not surprised the tests were negative, and frankly, I don't really care.

I went gluten free on my birthday, the day I got tested [01/04/2011] and got the flu a couple of days later. Three days ago, which was about four days after going gluten free, and the day I finally recovered from the flu all the way, I had ENERGY for the first time since last October [when I went gluten free for a couple of weeks without realizing it].

I was afraid it was a fluke, but yesterday, I had energy [i was tired in the afternoon, though, 'cause I was averaging 5 hours of sleep for a few nights], and today, I am cleaning my house and making my kids do their chores because I have enough energy to enforce the rules AND do work!

Oh yeah, my kids are gluten free, too, 'cause I got rid of everything with gluten [except for hubby's shelf] and my ten year old son, who has been depressed like I was since he was tiny [maybe six or seven?] told me that he feels happier since going gluten free.

I can't even tell you how incredible that makes me feel. He was starting to scare me a little, and I was trying this as a last resort before counseling.

Words simply cannot describe how I feel right now, but those of you who have gone gluten free and gotten better know exactly what I'm talking about. Thank you so much for your support!

0

Share this post


Link to post
Share on other sites

How wonderful for both you and your son. You must both feel like a cloud has lifted off you. :)

0

Share this post


Link to post
Share on other sites

How wonderful for both you and your son. You must both feel like a cloud has lifted off you. :)

Oh man! A big ole lead cloud! I'm tired right now because I worked all day, but watching my son act more and more cheerful as each day goes by makes my heart sing. :lol:

0

Share this post


Link to post
Share on other sites

Oh man! A big ole lead cloud! I'm tired right now because I worked all day, but watching my son act more and more cheerful as each day goes by makes my heart sing. :lol:

I am glad you guys are seeing such positive changes. My son shortly after going gluten free remarked that he never knew what 'being happy' felt like. Since he was in his late teens then it was quite a heartbreaking statement. So happy for you and for him.

0

Share this post


Link to post
Share on other sites

In addition to Ehlers-danlos syndrome, perhaps you should look into autonomic dysfunction (or dysautonomia). My particular brand is something called Postural Orthostatic Tachycardia Syndrome. Postprandal fluctuations in bp and pulse are not uncommon. Dysautonomia is common with us who have EDS (I can't remember exact percentages right now, but MUCH higher than a *normal* population), and can cause inability to regulate body temperature, pulse, blood pressure... even digestion. Anything that is controlled by the autonomic nervous system can be affected by this. Any underlying malabsorption issues that comes along with celiac/gluten-intolerance can fuel symptoms even more.

0

Share this post


Link to post
Share on other sites

Perhaps you didn't have the flu at all, but withdrawl?

0

Share this post


Link to post
Share on other sites

Don't be concerned because you think you are whinning. Celiac Disease is a life change and not a diet...a difficult life change. You have a lot of company and help with the people on this forum so don't hesitate to ask your questions. I was diagnosed with Celiac Disease in November 2009 and it was all the caring other Celiacs, not the medical professionals, that helped me cope with this life style change. It does get better so be patient.

0

Share this post


Link to post
Share on other sites

I'm sure you have had your B12 tested with everything else, but if you haven't I would suggest it. I have absorption issues alongside my celiac and IBS and when my B12 is low if I forget to get an injection I am clumsy, have 0 energy, can't think straight, incur memory loss, and just float in a general brain fog. This is the same for 2 of my cousins. As soon as we get our Injections it's easier to make it through the day!!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,882
    • Total Posts
      919,470
  • Topics

  • Posts

    • I'm actually scared to go to the doctor and could use some advice
      I suspect I am dealing with vitamin deficiency, but I'm afraid that if I go to a specialist they're going to think I have MS. As a person with pretty bad health anxiety, I can't bring myself to make the appointments I know I should make. I presented to my GP about 9 months ago with fatigue and a bizarre tingly feeling in my lower left leg. I was also suffering digestive distress, but I've lived with that off and on my whole life, so that was the least of my worries. My blood tests showed that my B12 level was 280. They didn't turn up any other issues, but then again she did not order any other vitamin level tests, only thyroid and routine bloodwork. She called my B12 level "on the low end of normal" and put me on oral supplements. When we retested 6 weeks later, it was 1100 and she told me to drop it back because that was too high and too much B12 can cause health issues, too. I'm confused by that because I've read that it isn't possible to take too much. I started a new career in a new town, and simultaneously began to feel better. The fatigue went away first, followed by the tingling and other stuff. Still plagued by both extremes of digestive distress. Maybe I should also mention that I was diagnosed with GERD at age 29 and have been on PPIs for 10 years. At that time, nobody ever mentioned investigating my GERD at such a young age, just put me on the pills and said stay on them. A gastroenterologist concurred after a very brief office visit. Well, I can be bad about taking my medicines, so I got off the B12. I figured maybe my earlier issues were stress-related. Now my symptoms are back, but worse. I have tingling and some aching in the leg. I have a sensation in one spot on my upper arms like the skin is burning, but no rash or redness. I have the C extreme of digestive problem, only alleviated by taking lots of magnesium citrate capsules. Sometimes I feel easily chilled, like waves of goosebumps. I am working to get off the PPIs in case they are inhibiting my absorption of vitamins. My mom has had really bad IBS all her life, plus eczema, headaches, etc. I'm back on the B12 for about 5 days but have experienced no relief yet, however I do remember that it took about 2 months to feel better the last time. Getting ready to move, on top of being really scared about these health issues, is making me crazy. I'm only 40 years old!!! Here are my questions: 1. Do I go back to the GP and ask her to order a celiac blood test? I know NOT to go off gluten until I am tested. 2. Do I ask for a referral to a neurologist or gastroenterologist instead? 3. Do  I wait until my mom's gastro appointment next month, when she plans to ask for a celiac blood test? See if hers is positive? 4. Do I keep driving myself insane with the worry that I have a degenerative illness? Can anybody identify with any of this at all? 
    • Eeek confused! Positive biopsy, negative blood test???
      I would hope they would check for the other reasons for the endoscopy results.  A GI might not check for all of those so you may need to check with your regular doctor to start that process.
    • Depression / anxiety issues
      The second link I gave you was to a series of online video courses, you can try those for free to see if its something you think might help. There are also a lot of worksheets you can download, the first link had some I think but there are plenty of others out there if you search online.  Finally I had another look and found this: http://www.getselfhelp.co.uk/step1.htm  Which looks like a decent 7 step program Obviously its not as good as a dedicated session with a CBT counsellor, but the above may give you some tools you can use, especially when your thoughts are spiralling into a destructive circle. You could also search to see if there's any group sessions in Melbourne, that's how the NHS delivers it, they would be cheaper and there's really no need for one on one CBT, because it's more about delivering knowledge of the toolset. I approached it very sceptically but found it of some use, although at the time I was still under the gluten influence so it never tackled the root problem. The game changing aspect of discovering this is that you now know why the psychologist sessions didn't hit the mark, how could they when the root of your depression was your illness? My sessions now are far better and more enjoyable than when I was under a gluten fog.  Aside from all this the other advice holds, eat well, exercise, get sunlight every day and the longer you're on the diet the better you should get.  Oh and at least NI put up a hell of a fight in the Euros, hope you got to see that down under!
    • Depression / anxiety issues
      How long did this last ? 😳
    • Depression / anxiety issues
      Funny enough that a naturopath at a mind & body convention that I attended last week said I was also deficient in selenium. You put your finger into a small holder (Similar to having your heart rate checked) she said I'm deficient in b vitiams, selenium vitiam d, she also said Somthing about having a lot of mercury in my body, to be honest it all went over my head as yet another thing to deal with so I haven't looked much further into it as it was all just to much, I have a print out of the results that she gave me tho, I'm going to look into it. Thank you for taking your time to reply to this thread 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,928
    • Most Online
      1,763

    Newest Member
    graags12
    Joined