Gluten Free But Still Have Extreme Fatigue/headaches

[Joe0123]

Ive been gluten free for almost a year and I have improved in many ways but I have this overpowering fatigue and lethargy. Basically everything just wears me out. I feel tired all the time. Also, when I try to do any exercise or am out in the sun for awhile, in addition to getting tired easily I will get god awful headaches. I tried going to my primary care doctor and ask him about nutritional deficiencies related to celiac but he said he can't really test for vitamin and mineral deficiencies. He also said my platelet count is still really low and Im going to see a hematologist. I think its either anemia or deficiencies related to celiac. What should I do? How does everyone else get tested for their vitamin and mineral levels? Thanks.

[Mari]

Your Dr is misinformed for there are some very good tests for vitamins and minerals. Consider going dairy free, many of us have a cow's milk allergy - most of us can tolerate goat's milk and yogurt. Have yourself tested for Lyme Disease as it's common among Celiacs. There are now some very good tests for food allergies (elisa tests) which might be part of your problem. I don't want to gross you out but you may have some parasites, there are several like tapeworms which can cause anemia and it is very common to have picked up a heavy infestation of small tapeworms from pets and raw fish (sushi). The medical lab tests might not find them because they are so inaccurate - I use herbal parasite programs and have actually seen the parasites when they came out tho my lab tests were always negative. It's good that you are seeing the hematologist - that should be very helpful.

[kayo]

  Quote

he can't really test for vitamin and mineral deficiencies

He needs to go back to med school!

At a minimum you should be tested for iron, vitamin D, and B12. Those are standard tests, nothing exotic or unusual about them.

Good luck with the hematologist

[Joe0123]

He did test me for Vitamin D. It was on the low side of normal. I was hoping he would've tested me for iron or B12 though, or any others. Hopefully the hematologist will do this. Or at least I'll tell him he needs to do it

[Looking for answers]

I would also recommend Adrenal and Thyroid tests, both can be affected by Celiac Disease, and both cause great fatigue.

[dilettantesteph]

You could try limiting your processed foods and see if that helps. It helped me. I get fatigue/low energy as a glutening symptom.

[GlutenFreeManna]

I get fatigue and headaches whenever I ingest something with soy. Soy is in a lot of processed foods and a lot of gluten free products as well. If you can't find anything with the testing, you might want to try an elimination diet to get to the bottom of it.

[Mack the Knife]

I have constant low energy levels and often have very extreme energy crashes out of nowhere. My iron levels are actually okay. My problem is low Ferritin levels. Ferritin is the protein that stores your body's iron and releases it as needed. So basically I have no reserve battery.

So when you get your iron levels checked, make sure they include Ferritin levels.

[thleensd]

Certainly you need to test B12, full iron panel, and D. My D was low and ignored until my *physical therapist* noticed! Mega doses of D followed, which kind of helped, but now I'm back in the "barely functional" energy range... and I don't know why either. Frustrating, isn't it!? I find that eating frequently helps a little... but something is still very off.

You definitely need to press for more tests. Although... quite often, vitamin/mineral deficiencies don't show up until they are very low. I think I'm being affected by "sub-clinical" deficiency issues.

  On 6/17/2010 at 3:26 AM, Mack the Knife said:

I have constant low energy levels and often have very extreme energy crashes out of nowhere. My iron levels are actually okay. My problem is low Ferritin levels. Ferritin is the protein that stores your body's iron and releases it as needed. So basically I have no reserve battery.

So when you get your iron levels checked, make sure they include Ferritin levels.

This sounds very familiar. Mack - what are they doing about your low ferritin/normal iron? I have low ferritin (but "normal" on their scale - barely). When I brought this up to my GI doc she pretty much shooed me away and said "don't worry about it". I don't agree. It's up to 20 (as of three months ago, but a 10 point drop since before then), which is much better than last year when it was down to 2 (!!!). Still, I'd like it higher.

I'm not sure where to go next, though.

Good luck!

[RoseTapper]

I also suffered from a low ferritin level for years after being diagnosed with celiac. Your doctor SHOULD know that tests are available for both vitamin and mineral levels--I think you need to see a new doctor. I'm serious. I had to change doctors four times before finding one that would help me. Most doctors simply don't understand how celiac and wreak havoc on our health through malabsorption.

I second the idea of having your thyroid tested--many of us have Hashimoto's thyroiditis, and it REALLY can make you feel tired. However, in your case, I strongly suspect low iron reserves. If your ferritin level is low, you can ask for iron infusions (once a week for four weeks), which will require you to go to a hospital for an iron drip. However, you'll feel like your old self again in no time! If your doctor insists on prescribing iron tablets, he's out of touch with the reality of celiac. Many of us have lost the ability to absorb iron in our small intestine, and simply ingesting more of it does absolutely nothing. Also, please don't consider pulverizing the tablets and placing them under your tongue with the hope of absorbing the iron sublingually. I tried that when oral iron didn't help after my celiac diagnosis, and my decalcified teeth soaked up the iron--they turned black! Even after six years and numerous whitening procedures, my front teeth are still gray.

[Joe0123]

My hematologist said by vitamin B-12 and folic acid are normal. He didn't think I was anemic and it doesn't seem like he is going to do anything else. What should I do? I am so sick and frustrated by uncaring idiot doctors who just give up even when I still feel bad.

[gf-soph]

  On 7/8/2010 at 9:30 PM, Joe0123 said:

My hematologist said by vitamin B-12 and folic acid are normal. He didn't think I was anemic and it doesn't seem like he is going to do anything else. What should I do? I am so sick and frustrated by uncaring idiot doctors who just give up even when I still feel bad.

One of the best bits of advice I've been given is to get copies of ALL blood tests, as the reference ranges for some things are far too low. e.g. B12 reference ranges are contentious - here in Australia the recommended minimum is 145, in Japan apparantly it is 500 - a pretty big difference. I have learnt from experience that if my B12 is below 300 I will start to feel off, if it is below 200 I will feel downright sick. Luckily my GP knows me well enough to inject me when I need it, so I get by ok.

See if you can get copies of the blood tests sent to you, and then post the results (and reference ranges) here. At worst, you will know it's not a problem, at best someone may be able to share their experience and it may help pick up something the drs haven't noticed.

Not to be down on all specialists (there are good and bad in all fields I know) but I saw a haematologist and found him very unhelpful. I am not able to keep my iron and B12 levels up without injections, and for a time my B12 levels would crash at a dramatic rate. He offered no interest or explanation, even though my GP was (and is) still concerned about it. A lot of the time you are faced with the unfortunate realtiy that most Drs will look for what they are most familiar with, and if you don't tick their boxes they will pass you on, or brush you off. Keep trying to find a dr who will take you seriously and look into things, it can make all the difference.

If nothing comes up, when looking at why my exhaustion was so severe my GP also had me complete a sleep study (to look for sleep apnoea - not there), and looked at my glucose and insulin (not quite right, but not that bad). Could be worth considering these too.

Also, I am going through a chemical elimination diet (for details, google 'RPA elimination diet' or 'failsafe'). It's complex, but I have been getting some good results after a couple of weeks, and the crushing exhaustion immediately after eating has gone away.

[jackay]

Headaches and fatigue can be caused by candida. I did a candida cleanse and the headaches went away. My fatigue isn't as much of an issue anymore either.

Supplementing with olive leaf extract seems to give me more energy.

[Joe0123]

My B-12 was actually high. Probably because I've been taking a multivitamin that has B-12 so its ok. Basically the hematologist told me I have a low platelet count and I'm positive for platelet antibodies, but my platelets are at 117,000 so its nothing to worry about. He isn't going to do anything else. I'm supposed to see him at the end of Sep. Should I get my iron levels checked? I asked his nurse this but she said since my hematocrit and hemoglobin levels are normal, he didn't see the point. Should I get my iron levels tested anyways?