Help! On The Diet For 18 Days And Still So Fatigued

[JillianLindsay]

So I've been gluten-free (or so I believe) for 18 days. There was a 3 or 4 day period where I felt GREAT, my energy returned and my fogginess cleared. Sadly, it was short-lived. I can't figure out if I'm repeatedly getting glutened or if something else is affecting me. My most troubling symptoms are fatigue and foggy-headedness; I just feel so weak and tired. I've been so diligent reading labels and eating as many natural and fresh foods as possible (plain meats with light pepper, fresh fruits and raw vegetables).

I've gradually started cutting out caffeine (switched from coffee to tea for a few days, and today had neither) and am considering cutting out dairy while my body heals. My question is, can this extreme fatigue only be the result of hidden gluten, or could something like lactose intolerance also cause this fatigue? I am getting tested on Tuesday but I know it will be a while before I get the results. I'm not having any GI issues (my main symptoms before diangosis were anemia, extreme fatigue, weakness and dizziness). I've been on gluten-free iron and b12 supplements for 6 months. The worst part is that I finally got a taste of what it's like to feel better and then I can't seem to get back there.

If I'm being extremely diligent and still feeling awful, am I just missing something? Or were those few days of feeling better psychological and the real relief will come soon? I've read it can take up to 3 months to feel better, but I won't get there if I'm getting glutened along the way! Please help!

[Takala]

It could be either, it can be frustrating.

Be sure to eat lots of "good" fat such as found in nuts, seeds, gluten-free peanut butter and avocados and olive oil, to provide slow burning fuel. Eggs are also high fat and high protein. You may also need to eat some sort of starchy vegetable, such as beans, (well drained and rinsed), potatoes, or corn, to get enough carbohydrate.

Too much rice combined with too much fruit, for me, if I am not exercising heavily that day, really messes up my blood sugar and will nearly knock me out.

A lot of us react to soy so you may want to cut that out, also, you can try cutting out dairy. I was able to reintroduce organic dairy if it doesn't have lactose, after a few years, but I have to be careful. I use coconut milk or hemp milk if I put white stuff in coffee or tea. One brand of the hemp milk gives me headaches, I think it is their rice syrup, which I avoid now.

Go over your medications if you take any, to make sure they are gluten free.

A lot of people have problems with Rice or Soy Dream beverages because they use barley malt enzymes to process the rice syrup or beverage, so you may want to switch to another brand.

You're probably just missing something. I made several loaves of gluten-free bread with something that was messed up, I couldn't figure it out until one day I skipped the toasted piece of bread for breakfast. REALLY annoying. Well, it turned out I was reacting big time, for reasons unknown, to this gluten-free yogurt, so I had to switch brands.

I leave dairy OUT of my baking now, one less thing to worry about.

[tiredofbeingsickandtired]

I went off caffeine in March, seriously I was messed up (as in thought I was losing it messed up, I felt horrible). ...even more with being on gluten. So I can hazard aguess that by cutting back on caffeine, gluten, etc that your body is mot very happy right now. I did have to cut out dairy, soy when I went gluten free in June, I felt great for about 2-3 days then all heck broke loose and I had almost 3 weeks of extreme fatigue, heart palpitations, just feeling awful. I feel so much better now so I know the diet is really helping.

Also defintly make sure you aren't glutening yourselfother ways. I would stick with protein, veggies, fruit..safe foods during this time. I also eat millet bread but its only one slice a day.

Hope you feel loads better soon!

[glutenfreeinaz]

It sounds like withdrawal to me... from both caffeine and gluten.

[tommchale]

Keep the faith! Healing can be a long process. Progress can be steady, but slow as most people don't experiece dramatic changes in just a couple of weeks.

Avoiding all the "hidden" glutens is key also.

Also, make sure your doctor knows you have been gluten free for a few weeks prior to being tested. Absence of gluten before the tests can lead to false results. If you're getting a biopsy, no matter, the doc will be able to tell. If its blood tests for markers you may get negative results as you have not had gluten exposure in a while

Best to you - stay persistent - you will get better!

Tom

[Jackpru]

Hi Everyone, I've just found this site and am interested in all your replies about this "still feeling tired"

I haven't been diagnosed with gluten intolerance but was diagnosed with ME?Chronic fatigue over 20 years ago.

About 5 weeks ago I happened to get hold of the book Is Gluten Making you ill by Shari Lieberman. I was absolutely gobsmacked because although I had known for years that I had a lot of problems with my gut and bowels, my doctor had never suggested I had the gluten test although he did say I might have IBS. I just couldn't believe the amount of problems gluten caused and decided then to try the gluten free diet for a couple of weeks just to see how I felt.

Well the first week was really good and I did have a lot more energy my joints in my feet had been very swollen and they have all gone down, also my diarrhoea and loose bowel has cleared up, in fact I have gone the other way but the crunch is, that after being on the diet for 5 weeks, I also am really so so tired. My head is like fog again and in the mornings I just cannot seem to wake up, feeling that I have taken sleeping pills or something.

I have just had what I think was the flu which started about 2 weeks into the diet but this fatigue had already started by then.

I was interested in reading that one of you said that rice had upset your blood sugar levels because this is one of my staple diet products. I am on Rice Milk and also eat 3 - 4 rice cakes every day. I did try the gluten free bread but still have an intolerance I think to the maize in it because it just bloats me but on thinking the first week I was eating the bread but then switched to the rice cakes.

I know I should probably go for the test but cant face the doc saying no its negative when I know at least it is helping my joints.

In her book Shari Lieberman says it can take up to 3 - 6months to start feeling well so I am quite prepared to stick it out.

[climbmtwhitney]

Hi Jillian,

I, too, think it sounds like withdrawal. Both my daughter & I went through it. Initially, we both felt wonderful--about 5 days for my daughter and about 10 for me. But, then we felt just awful! It felt like the flu with extreme fatigue, body aches, nausea, headaches, etc. I remember posting here too, trying to figure out what was up. I also called my nutritionist & asked about it. Turns out it was withdrawal from gluten. My daughter's lasted about a week, but mine lasted a full 5 or 6 weeks. Ugh. When we did make it to the "other side", we felt super. So, please hang in there. A month or two or more is not unheard of. Plus, I'm sure ditching the caffeine at the same time is taking its toll. Incidentally, my nutritionist did recommend taking charcoal caps (found ours at Whole Foods) to speed up the elimination of the toxins. We did do that, but I really couldn't say whether or not they helped because we didn't have anything to compare our experience to. Best of luck to you! Hope you feel better soon!

Jillian

[JillianLindsay]

Thanks so much everyone for your words of encouragement It helps to know I'm not the only one that has gone (or is going) through this. I already had my blood work done in May and endoscopy in June so I am not worried about skewing any test results. I will keep searching for hidden sources of gluten and will try to be patient as my body adapts to a new diet. Thanks!