1 Month Gluten Free - Still Some Hiccups

[IveGotEffinCeliac]

So I've been strictly gluten free for a bit over a month now and a few things seem to be really improving. Along with this forum, that gives me hope. However, the two symptoms that were/are most concerning for me haven't changed at all.

1. The mental "brain fog" isn't getting any better, and my short term memory...... Forget about it, it doesn't exist. Period. I'm absolutely unwilling to accept that this is how I'm going to function mentally from now on. That's not going to happen. Does anyone else feel this way?

2. The muscle fatigue is like nothing I could have imagined prior to a year ago. I can't squat down to play with my nieces without feeling like my legs are going to give out on me as I try and stand up. This one breaks my heart. I don't even recognize my body in the mirror anymore.

I guess my question at this point is, who all does their own vitamin injections, and specifically what are ya'll taking besides a really good (gluten-free) multi, and a healthy daily dose of Omega 3's?

I'm going to start doing B injections, just wondering what everyone else takes/injects. I'm very comfortable doing self injections both intramuscular and subcutaneous. I've got the fish oil, and multi down pat, now I need to know what else I need to be researching.

Just as an aside, celiac.com is amazing and I'm so grateful to have found this forum.

[anabananakins]

1. The mental "brain fog" isn't getting any better, and my short term memory...... Forget about it, it doesn't exist. Period. I'm absolutely unwilling to accept that this is how I'm going to function mentally from now on. That's not going to happen. Does anyone else feel this way?

My doctor put my on nystatin for candida/yeast overgrowth and that has really helped with the brain fog, which had lasted even after I went gluten free. Might be something to consider?

2. The muscle fatigue is like nothing I could have imagined prior to a year ago. I can't squat down to play with my nieces without feeling like my legs are going to give out on me as I try and stand up. This one breaks my heart. I don't even recognize my body in the mirror anymore.

My endocrinologist was nagging me to lose more weight (I have insulin resistance) and when I complained that I was physically exhausted all the time he tested my vitamin D and it was insanely low (2, should be 50 with 70 optimal). I hadn't heard of the symptoms of vitamin D deficiency before but they include muscle fatigue. I live in a very sunny place and I never dreamed I could be Vit D deficient, I was more concerned about avoiding skin cancer. I don't drive so I'm outdoors walking to the bus stop etc, so getting more incidental sunlight than a lot of people would. So I would urge you to get that tested. Low vitamin D is associated with some awful things.

Hope this helps - all the best to you.

[Takala]

Only a month isn't that long.

You could still have cross contamination issues that you are not aware of yet. Be sure you are not accidentally getting gluten from old cooking pans, toasters, colanders, cosmetics or pet foods or somebody else's crumbs. Depending on the amount of damage you have it is going to take awhile to get healed up and be able to use nutrients. You might also have a food intolerance to something else, such as soy or dairy or another food group, and you will find yourself doing better once you get settled with what sort of food agrees with your body and gives you energy.

I found that once my hormones started dropping off after menopause, in my mid fifties now, my short term memory got worse, so I have to develop tricks to work around this, and just accept that the really good, effortless memory I used to have is gone and I now have the regular model. This means I don't hesitate to write notes about stuff instead of winging it from visual images.

I take a multivitamin, B complex, and a calcium/D supplement, and I eat a lot of blueberries.

This also means that if I want to continue to write things that don't sound like gibberish I have to discipline myself more. I was eating more gluten free carbohydrates early in the day, but that just doesn't work for me, and I seem to think better on proteins and fats. This means I went back to something closer to a specific carbohydrate/Atkins style first meal. I also have to exercise.

[IveGotEffinCeliac]

Only a month isn't that long.

You could still have cross contamination issues that you are not aware of yet. Be sure you are not accidentally getting gluten from old cooking pans, toasters, colanders, cosmetics or pet foods or somebody else's crumbs. Depending on the amount of damage you have it is going to take awhile to get healed up and be able to use nutrients. You might also have a food intolerance to something else, such as soy or dairy or another food group, and you will find yourself doing better once you get settled with what sort of food agrees with your body and gives you energy.

I found that once my hormones started dropping off after menopause, in my mid fifties now, my short term memory got worse, so I have to develop tricks to work around this, and just accept that the really good, effortless memory I used to have is gone and I now have the regular model. This means I don't hesitate to write notes about stuff instead of winging it from visual images.

I take a multivitamin, B complex, and a calcium/D supplement, and I eat a lot of blueberries.

This also means that if I want to continue to write things that don't sound like gibberish I have to discipline myself more. I was eating more gluten free carbohydrates early in the day, but that just doesn't work for me, and I seem to think better on proteins and fats. This means I went back to something closer to a specific carbohydrate/Atkins style first meal. I also have to exercise.

Thank you very much. Although I'm not willing to accept my memory loss, because I know that it can be reversed, I'll definitely consider cross contamination as a possibility. Thank you so much for the input, and helping me make sure my writing also doesn't sound like gibberish.

[tarnalberry]

How is your sleep? Do you feel tired during the day, regardless of how many hours you spend "in bed" or "asleep"? You might consider a sleep study. What you describe is similar to how I would describe my fibromyalgia, which was significantly contributed to by restless leg (which was contributed to by anemia, but not due to celiac disease).

[IveGotEffinCeliac]

How is your sleep? Do you feel tired during the day, regardless of how many hours you spend "in bed" or "asleep"? You might consider a sleep study. What you describe is similar to how I would describe my fibromyalgia, which was significantly contributed to by restless leg (which was contributed to by anemia, but not due to celiac disease).

I will definitely look into this. Let me ask you this, isn't anemia one of the many different manifestations of celiac due to the inability to absorb iron? I've always had trouble falling asleep. Honestly, I wouldn't imagine it was at all related to my celiac. I've had sleep issues for close to 20 years, and just figured it was a part of life for me. Ambian, lunesta, anti depressants, benedryl, soma's... You name it, I've tried to use it to help me sleep. Definitely ask the doc about a sleep study.

[sandsurfgirl]

I hate to tell you this but it can take awhile to heal and your body can get all wonky for awhile.

Don't hate me, but I wasn't fully well for 6 months. I did get better all the time, but feeling really good and having symptom free days took awhile. At 1 month I was still very very sick and not functioning too well.

[tarnalberry]

I will definitely look into this. Let me ask you this, isn't anemia one of the many different manifestations of celiac due to the inability to absorb iron?

It certainly can be, but - for me - it developed years after going gluten and dairy free.

Good luck figuring out the sleep issues. A chronic lack of sleep is murder on the body, throwing MANY systems out of whack and creating problems that you might not ordinarily assign to sleep.

[IveGotEffinCeliac]

I hate to tell you this but it can take awhile to heal and your body can get all wonky for awhile.

Don't hate me, but I wasn't fully well for 6 months. I did get better all the time, but feeling really good and having symptom free days took awhile. At 1 month I was still very very sick and not functioning too well.

I'm definitely not hating. There's just this sense of urgency to get myself back to my pre celiac days. My wife is expecting our first child in 8 weeks, and I don't want to be sick anymore when my son is born.

The cross contamination is a real concern of mine. I eat free where I work, (I manage a department at a casino) but there's no definitive way to prove or disprove cross contamination. I eat exactly the same thing at work each and every day. I have plain old cottage cheese with sliced canned peaches. I have plain scrambled eggs with some basic salsa mixed in. I have chopped fresh fruit.. Usually its watermelon and pinapple.

I don't see bringing food to work as a viable financial option. So hopefully I'm not beign cc'd when I eat there.

I totally get it about one month not being long enough for me to feel better. I'll keep pluggin away and hopefully my body really is reparing itself.

[IveGotEffinCeliac]

It certainly can be, but - for me - it developed years after going gluten and dairy free.

Good luck figuring out the sleep issues. A chronic lack of sleep is murder on the body, throwing MANY systems out of whack and creating problems that you might not ordinarily assign to sleep.

Thank you. I've just accepted that sleep will always be a struggle. I can live with that, much easier than I can live with the way my body looks today compared to 2 years ago.

[Chakra2]

I'll chime in with another "it takes awhile" comment. My GI symptoms improved immediately going gluten free, but the other symptoms (brain fog, the blues, fatigue, joint pain) took much longer to clear up. It was 5-6 months before I felt remotely okay for more than one or two days at a time. The things that helped me, I think, were time to heal; eliminating dairy, soy and nightshades (nightshades especially made a difference pain-wise); weeding out more and more contamination culprits (including avoiding all restaurant food for awhile); changing personal care products to all gluten-free shampoo, etc; making the whole house gluten-free (dog food, no gluten at home for husband).

Also, after keeping a food diary to help track down my other intolerances I did notice that eggs make me feel totally exhausted. I eat them once a week or so anyway just for some variety but I now know to expect major sleepiness 1-2 hours later. So between the cottage cheese, eggs, and salsa (nightshades) you could be eating something there that doesn't agree with your body right now. So you might want to explore other food intolerances before you work on the supplement angle. Getting rid of foods that are slowing down your healing will help the supplements work better, in my opinion.

I did try to get my b levels up from the beginning with probiotics (I still take a double dose most days) and fermented foods like Rejuvelac. (google it for a recipe -- and then follow the directions but use quinoa instead of rye or any other gluten grain). So you could try that before you jump to injections.

One caution for the future -- look out for gluten in baby stuff! Switching to gluten-free baby shampoo, lotion, and diaper cream really helped me and my son. I like the California Baby products because they're so clear about their allergen labeling.

I hope you find some relief here before your baby comes. I have never felt as stressed as I did trying to care for my child while I was still sick. Not fun. Good luck!

[IveGotEffinCeliac]

I'll chime in with another "it takes awhile" comment. My GI symptoms improved immediately going gluten free, but the other symptoms (brain fog, the blues, fatigue, joint pain) took much longer to clear up. It was 5-6 months before I felt remotely okay for more than one or two days at a time. The things that helped me, I think, were time to heal; eliminating dairy, soy and nightshades (nightshades especially made a difference pain-wise); weeding out more and more contamination culprits (including avoiding all restaurant food for awhile); changing personal care products to all gluten-free shampoo, etc; making the whole house gluten-free (dog food, no gluten at home for husband).

Also, after keeping a food diary to help track down my other intolerances I did notice that eggs make me feel totally exhausted. I eat them once a week or so anyway just for some variety but I now know to expect major sleepiness 1-2 hours later. So between the cottage cheese, eggs, and salsa (nightshades) you could be eating something there that doesn't agree with your body right now. So you might want to explore other food intolerances before you work on the supplement angle. Getting rid of foods that are slowing down your healing will help the supplements work better, in my opinion.

I did try to get my b levels up from the beginning with probiotics (I still take a double dose most days) and fermented foods like Rejuvelac. (google it for a recipe -- and then follow the directions but use quinoa instead of rye or any other gluten grain). So you could try that before you jump to injections.

One caution for the future -- look out for gluten in baby stuff! Switching to gluten-free baby shampoo, lotion, and diaper cream really helped me and my son. I like the California Baby products because they're so clear about their allergen labeling.

I hope you find some relief here before your baby comes. I have never felt as stressed as I did trying to care for my child while I was still sick. Not fun. Good luck!

Wow, thank you for taking the time with that great reply. I studied up on nightshades, and it's sort of like dairy for me. If I have to give up on my salsa, and tomatoes.... Well, I just wouldn't ever give those up. Eliminating gluten is an amazingly difficult pill to swallow. For me personally, I have to draw the line somewhere. Thank you for the heads up on baby stuff containing gluten. We'll be aware of this and proceed with caution. And thank you. I hope I feel better before he's born too!

[fatlazyceliac]

I've only been gluten-free for two months, but went and got blood levels tested anyway. I'm low in Vit. D and borderline low on B12, so just started taking both. We'll see how they help!

[IveGotEffinCeliac]

I've only been gluten-free for two months, but went and got blood levels tested anyway. I'm low in Vit. D and borderline low on B12, so just started taking both. We'll see how they help!

I'll definitely follow your progress! Hope the B and D make a huge difference for you.

[IveGotEffinCeliac]

and thank you!

[Looking for answers]

While you're getting all your other vitamin/mineral levels checked out, have them test you for iron deficiency. I can hardly remember my name when my iron levels are low. Also, when my thyroid acts up, my memory loss does too.

[IveGotEffinCeliac]

While you're getting all your other vitamin/mineral levels checked out, have them test you for iron deficiency. I can hardly remember my name when my iron levels are low. Also, when my thyroid acts up, my memory loss does too.

Thank you. I may have to look into another GI. The nurse or secretary at this office is very unhelpful. I got all my levels tested, and she won't tell me anything other than "your results look pretty normal." I'm going to physically drive up there and get a copy of my labs, then I'll have a starting point.

[ravenwoodglass]

Thank you. I may have to look into another GI. The nurse or secretary at this office is very unhelpful. I got all my levels tested, and she won't tell me anything other than "your results look pretty normal." I'm going to physically drive up there and get a copy of my labs, then I'll have a starting point.

If your happy with your GI before you switch tell the doctor why your considering changing doctors. Doctors need to know when their staff is rude and unhelpful.

[IveGotEffinCeliac]

If your happy with your GI before you switch tell the doctor why your considering changing doctors. Doctors need to know when their staff is rude and unhelpful.

Thank you! I'll do just that.

[michellern]

I hate to tell you this but it can take awhile to heal and your body can get all wonky for awhile.

Don't hate me, but I wasn't fully well for 6 months. I did get better all the time, but feeling really good and having symptom free days took awhile. At 1 month I was still very very sick and not functioning too well.

I have been gluten-free for 1 month now. The nausea is better, but I still do not have an appetite. I am also on a 2 week lactose free trial. Doctor thinks maybe lactose intolerent. I am still not functioning well at all. I am still not able to return to work! I am trying to be patient!

[jackay]

My doctor put my on nystatin for candida/yeast overgrowth and that has really helped with the brain fog, which had lasted even after I went gluten free. Might be something to consider?

Nine months later I still have brain fog and short term memory issues. I've been trying to rid myself of candida for quite some time with natural supplements. I definitely need to see my doctor soon about trying Nystatin.

Can anyone help me out with what a normal dosage is. Is generic Nystatin effective? Is there a chance the generic would contain gluten?

[IveGotEffinCeliac]

I have been gluten-free for 1 month now. The nausea is better, but I still do not have an appetite. I am also on a 2 week lactose free trial. Doctor thinks maybe lactose intolerent. I am still not functioning well at all. I am still not able to return to work! I am trying to be patient!

Is losing your appetite a common side effect of Celiac? I just want to eat and eat and eat and eat. Only thing is, I am losing weight rather than gaining.

[IveGotEffinCeliac]

Nine months later I still have brain fog and short term memory issues. I've been trying to rid myself of candida for quite some time with natural supplements. I definitely need to see my doctor soon about trying Nystatin.

Can anyone help me out with what a normal dosage is. Is generic Nystatin effective? Is there a chance the generic would contain gluten?

I feel so relieved to hear that other people experience the same brain fog. I'm really sorry that yours isn't much better. 9 months? Are your villi repopulating?

[jackay]

I feel so relieved to hear that other people experience the same brain fog. I'm really sorry that yours isn't much better. 9 months? Are your villi repopulating?

I have no idea since I never had an endoscopy nor do I plan on having one. I am hoping it is a candida issue since I am still battling that.

[IveGotEffinCeliac]

I have no idea since I never had an endoscopy nor do I plan on having one. I am hoping it is a candida issue since I am still battling that.

When will you find out?