[sunnybabi1986]

I went on a gluten free diet 4 weeks ago and have been very diligent, making sure that nothing is cross-contaminated. My stomach felt so much better within 2 weeks, but my exhaustion didn't change at all. Now, 4 weeks later, I'm actually getting more exhausted. When I wake up in the morning, I'm so exhausted, I feel like I need to go straight back to bed. Unfortunately, I have a 2 year old son to take care of for 10 hrs/day while my husband is at work, so things aren't going so well. My energy level changes from day to day usually, but for 4 days now, it's been dropping consistently. I feel AWFUL.

I don't have insurance right now and I'm currently applying for it, so I have to be very careful what I do. If the company finds out I'm having any tests run, they will likely deny me. I can go to the health department and pay in cash to stay safe, but I'm not sure what tests I should have run. Obviously, iron levels would be a definite, but what other deficiencies are common with gluten intolerance?

I'm afraid I'm not getting enough carbs, as my primary carbs right now are potatoes and rice, and I only eat them every other day. I'm getting very tired of both of them and I don't want to burn out on them so soon. I started taking a multivitamin a few days ago (gluten free, of course), but I know if I have deficiencies, it may take more than a multivitamin to get me back on track.

I'm currently waiting for my results from Enterolab, so I'll find out next week if I have a sensitivity to dairy.

Any suggestions?

Janie

[mushroom]

Hi Janie, sorry you are feeling so awful. Yes, there are several levels that celiacs should have checked:

Obviously, as you say, ferritin (iron); also Vit. D, B12, folate, also thyroid (TSH, free T4 and free T3, and antibodies). These are the major ones to start with. I have no idea how much these tests cost if you have to pay out of pocket. It is always a shame to be between insurances. Best of luck to you.

[yolo]

You might want to try going on either a paleo diet or a specific cabohydrate diet. It might be best to avoid the rice and potatoes, either one or both could be bothering you. You could substitute squash and other roots besides potatoes instead for the carbohydrates. It also might be helpful however to make your diet more low carbohydrate and thus emphasize the vegetables and fruits with some meat. Simple digestive enzymes might be a good idea too. I suggest something like Now's plant enzymes. And of course avoid all sugars...though fruit (not in excess! in case you have candida overgrowth too ) may be just fine for you.

Hope you are avoiding milk products since they often are a problem esp. at first. You could however try making 24 hour yogurt at home. Basically it is regular yogurt made with whole milk and then fermented someplace warm like an oven with a pilot light in it or a drop light inserted into the oven and turned on. The idea is to ferment it that long in order to get rid of all the lactose while at the same time increasing the probiotics.

Your body might also be detoxing, so give it time to recover... Its possible that a simple detox herb like dandelion root or milk thistle might help. Just make sure they are gluten free--thus no alcohol tinctures! The dry herbs are safest. I personally boil up a brew. You can look it up online or even google it here where I have gone into detox herbs more thoroughly.

Please let me know if any of these suggestions help.

Bea

[GottaSki]

Mushroom already suggested the necessary blood work. Mine were personally low in B, D, K, Iron, Ferritin, Zinc and Copper upon Celiac Dx. I currently take Multi, Fish Oil, Calcium w/ D and B supplements - along with Malic Acid/Magnesium...

I too had major improvement of gastro issues within the first two months gluten-free, but my fatigue and achy/stiffness got MUCH worse over the past 8 months to the point I wasn't able to function more than 6 hours a day.

Most recently I was diagnosed with Fibromyalgia. I am finding some increase in my energy levels since I've started taking Malic Acid/Magnesium. I was already taking Magnesium after Celiac Dx, but have switched to the Malic/Mag combo and am able to exercise again

Nutrient testing is a great place to start.

Good Luck to you!

[nu_to_no_glu]

I agree. It's a really good idea to have the test done. I've recently gotten my tests back and my dr made a chart of many different vitamins for me to take, as well as B12 injections. From what he explained, a multivitamin wouldn't provide the appropriate amount of supplements. He also stated that it could take a year before I feel 100 percent, so I needed to get started on them asap! I am still adding them 1 by 1 to my routine gradually.

It stinks you don't have insurance I truly understand how you feel...I have a 2 year old also, and know what fatigue is! The vitamins have helped so far...I'm almost 3 months gluten-free, and the fatigue is starting to lift gradually...good luck!

[sunnybabi1986]

Okay, so I talked to my local health department and they said they could do some testing for me without a doctor's orders, since I'm uninsured right now and trying to figure this out on my own.

She asked me which vitamins/minerals I needed testing for. Add or subtract anything you see:

Iron
Vit D
B12
Folate
Vit K (?)
Zinc (?)
Copper (?)
Thyroid (I had these levels checked 6 months ago...all normal. Do I really need to test again?)

Anything else I should ask to be tested for, or do I need to shorten my list?

Thanks for all the help!!

Janie

[yolo]

Looks good to me--if they do check the thyroid have them check your t-3 levels--they often forget to do this. Could also check your adrenals. Also for me it was my B-1 that was insufficient, not the B-12; so if you can get them to check all your B's that might be helpful...

[Alphawave]

sunnybabi1986, on Nov 14 2009, 09:54 AM, said:

I went on a gluten free diet 4 weeks ago and have been very diligent, making sure that nothing is cross-contaminated. My stomach felt so much better within 2 weeks, but my exhaustion didn't change at all. Now, 4 weeks later, I'm actually getting more exhausted. When I wake up in the morning, I'm so exhausted, I feel like I need to go straight back to bed. Unfortunately, I have a 2 year old son to take care of for 10 hrs/day while my husband is at work, so things aren't going so well. My energy level changes from day to day usually, but for 4 days now, it's been dropping consistently. I feel AWFUL.

I don't have insurance right now and I'm currently applying for it, so I have to be very careful what I do. If the company finds out I'm having any tests run, they will likely deny me. I can go to the health department and pay in cash to stay safe, but I'm not sure what tests I should have run. Obviously, iron levels would be a definite, but what other deficiencies are common with gluten intolerance?

I'm afraid I'm not getting enough carbs, as my primary carbs right now are potatoes and rice, and I only eat them every other day. I'm getting very tired of both of them and I don't want to burn out on them so soon. I started taking a multivitamin a few days ago (gluten free, of course), but I know if I have deficiencies, it may take more than a multivitamin to get me back on track.

I'm currently waiting for my results from Enterolab, so I'll find out next week if I have a sensitivity to dairy.

Any suggestions?

Janie

A couple of things come to mind. Both my daughter and I (both celiacs) have low Vitamin D, B and we are both within 6 weeks of being diagnosed. I also had a very high CRP level (denotes inflammation). My joints and muscles HURT, just not as badly as before the gluten-free diet. BOTH of us had bad problems during the 2-3 week period following the gluten removal. I had a horrible yeast infection and broke out in boils, and felt enormously fatigued. My daughter had acne, etc. and tiredness. I am guessing (I am a nurse) that the toxins and dysbiosis (gut flora disturbed) were dying off and causing some of the symptoms. When my yeast overgrowth stopped, I felt like I had the flu or something (this is called Herxheimer reaction), the yeasties die of creating a bad toxin, until they all die off. The toxins dying off stress your liver and kidneys, making you feel sick. Remember, everyone has a different level of intestinal villa damage. If yours is severe, it could take a long time to feel healthy again. If yours was mild and you are young enough, then you will probably feel like "new" shortly.

I unfortunately have osteoporosis from this, and I cannot tolerate the osteo drugs like fosamax, etc. I am building back up with supplements and continuing with an organic based diet and purified water,(which I had been doing for years, anyway).

Hope that helps.

[yolo]

Alphawave, on Nov 21 2009, 03:55 PM, said:

A couple of things come to mind. Both my daughter and I (both celiacs) have low Vitamin D, B and we are both within 6 weeks of being diagnosed. I also had a very high CRP level (denotes inflammation). My joints and muscles HURT, just not as badly as before the gluten-free diet. BOTH of us had bad problems during the 2-3 week period following the gluten removal. I had a horrible yeast infection and broke out in boils, and felt enormously fatigued. My daughter had acne, etc. and tiredness. I am guessing (I am a nurse) that the toxins and dysbiosis (gut flora disturbed) were dying off and causing some of the symptoms. When my yeast overgrowth stopped, I felt like I had the flu or something (this is called Herxheimer reaction), the yeasties die of creating a bad toxin, until they all die off. The toxins dying off stress your liver and kidneys, making you feel sick. Remember, everyone has a different level of intestinal villa damage. If yours is severe, it could take a long time to feel healthy again. If yours was mild and you are young enough, then you will probably feel like "new" shortly.

I unfortunately have osteoporosis from this, and I cannot tolerate the osteo drugs like fosamax, etc. I am building back up with supplements and continuing with an organic based diet and purified water,(which I had been doing for years, anyway).

Hope that helps.

I totally agree that its likely both of you have been detoxing and thus so very tired. Besides the dandelion root and possibly cleavers etc. etc. I highly recommend using olive leaf --either make a tea out of the leaves or buy a gluten free olive leaf extract capsules like from NOW. It helps immensely against aches and pains, esp. muscular ones, and fibromyalgia like symptoms--as well as viruses and bacteria and fungi (think candida girls!).

As far as the osteoporosis (which I also have) I now take E-zorb as my calcium source (available online only--this Chinese formula/invention after 20 years resarch is 90% absorbable--the only thing that works for me who used to peel my fingernails, falling out hair etc.) in addition to home made 24 hour yogurt (by then all the lactose has been fermented out). It is fantastic for the gut plus is still a very good source of more absorpable calcium. I periodically try going off the E-zorb but soon enough discover I need to get more again due to achey joints--my neck in particular--though its not as bad as it was now that I take the olive leaf regularly --though its obviously still needed.

Taking vitamin D is important too. I personally like cod liver oil, though I know not everyone can digest it...

[Lynayah]

Last year, I was diagnosed as having basically almost no vitamin D in my body. I cannot even begin to tell you the exhaustion I felt. I was also in pain, my joints were swelling, and I was so weak I could hardly carry a quarter pound wallet purse. It was horrible . . . and I never, ever, EVER would have guessed my problems were from a vitamin deficiency. I was always so careful to take care of myself.

I had been taking a high quality multi every day, as well as extra calcium, etc., but my body was not absorbing D.

I agree with the other wonderful posters here: As soon as you are able, you might want to consider having a GOOD GI or rheumatologist check your vitamin levels -- or whatever assistance you can get right now.

Be careful -- it is important not to self-diagnose yourself and equally important not to take mega-doses of D (or other vitamins) on your own. You need a qualified professional to guide you. D can be dangerous if not administered correctly, as warranted, in just the right amounts.

You're in my prayers.

Lyn