Still Soooo Tired After 3 Months gluten-free

[feelingbetter]

Hi- I have been gluten-free for 3 months and 2 months dairy free. I have also given up soy, corn and sugar. I have many improvements with symptoms but I am still so weak and tired all the time. I give myself weekly b12 shots, take pharmaceutical grade vitamins, adrenal support, betaine hydrochloride, malic acid and iron. I am under an alternative doctor's care. I see him next week.

I sleep every night 9 or 10 hours and have to nap every afternoon for 2 hours. I just have no energy. It is a good day if I can go out and do groceries. I basically eat the specific carbohydrate diet. I really don't know what else to do. I have so little energy.

Is this normal? I am 45. Any ideas? I am getting so discouraged.

Thanks

Brenda

[mamaw]

Hello

I think you will find many feeling like you do. One suggestion might be is to get your thyroid checked. You actually can do it yourself by taking your temp every morning in bed before you get out of the sack plus count your pulse first thing in the morning for thirty days. Keep a log & take that info when you visit your alternative Doc....

hth

mamaw

[gfpaperdoll]

have you double checked all your supplements for ingredients you could be reacting to?

do you live in a house that is totally gluten-free?

are you getting enough fat & protein & calories in your diet everyday?

have you given up sodas, & artificial sweetners?

maybe look for other food intolerances or a food allergy. Sleeping is one of my symptoms for a food allergy...

keep looking for something is causing you to not have any energy.

[feelingbetter]

Hi Gfpaperdoll- I have checked all supplements and my house is gluten-free/df. I don't use any sodas or sweetener of any kind. I use plenty of olive oil, fish oil and flaxseed oil.

Mamaw my thyroid was checked 2 months ago and my TSH was 3. Low normal I think.

The only thing I can think of is maybe my supplements are not gluten-free even though they say they are. I wish I knew. Maybe I will stop taking them all and see how I feel.

[pele]

If can take a while to get better. Months, even years, so hang in there.

Have you checked out the website Stop the Thyroid Madness?

It has pages of info about thyroid and adrenal function. If you can spend some time reading through it, you may have a few things to tell your alt doc about.

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[kbtoyssni]

Mamaw my thyroid was checked 2 months ago and my TSH was 3. Low normal I think.

The only thing I can think of is maybe my supplements are not gluten-free even though they say they are. I wish I knew. Maybe I will stop taking them all and see how I feel.

Maybe you could post what brand of supplements you take, and we could give you input if they give us problems. I *think* I've heard that a low thyroid can still be a problem, but it often gets ignored because it's technically in the normal range. Lots of tests are like that. Normal ranges are based on an average of many people, so the low side of the normal range may still be too low for you.

[AliB]

My doctor told me that you can still have 'subclinical' thyroid deficiency even if your levels appear to be normal. How they work that out I don't know.

I too have been gluten-free for a little over 3 months and was hoping my energy level would be better than it is. i have a little more but what I am finding now is that I am reacting to foods that I thought were safe but aren't. As time has gone on I am becoming far more sensitive and the reactions are becoming more obvious. It has made me realise that I have actually been getting glutened without realising - just thinking that I was reacting to some other foods instead.

For instance. I seem to be ok with oats and had been buying some little nut and seed cookies that appeared to be safe with nothing resembling gluten in them. Whilst I could eat them ok to start with (one of the few foods I could cope with), latterly I noticed that after one or two of them my stomach would feel a little uncomfortable. I assumed that I was reacting to something else as I knew they didn't contain wheat or gluten or that it was just because my body was still not yet healed.

But on Saturday I had an obvious 'gluten' reaction to some cookies I made and concluded that the oats were probably contaminated at source in the factory. I had a totally sleepless night and 2 uncomfortable days. I just got over that and this night have gone through it all over again. I had 2 or 3 of the nut and seed cookies yesterday but have now realised that they too are probably contaminated.

I suspect I am reacting more now because my immune system is starting to wake up and produce more antibodies (I'm thinking of getting tested again as the level might well be higher now than it was when I was really bad 3 months ago - if my immune system was very depressed it's not surprising my antibody level was only 1! As I obviously have such an extreme reaction to gluten then I am confident I am Coeliac, negative test or not).

Like me, you may well have been getting glutened without realising it from foods you thought were safe.

[ive]

I would suggest to stop taking any vitamins or supplements for a week. One week is too little time to notice any vitamin deficiencies but you will know if you are getting glutened from your supplements. That is how I discovered that one of my vitamins (says on the label that there is no gluten, but I guess there is cross-contamination) is giving me problems. I guess I am very sensitive:-(

Also please look at other possible sources of cross-contamination. Please look at all your products and do not assume that any of them are safe. I was being glutened by my favourite Hero jam, one of the ingredients in it was glucose syrup which was apparently derived from wheat (there was no mention of it on the label, I live in Canada and our laws are different than in the US).

Also I remember that some labs consider TSH=3 as hypothyroid, so may be it is worth following it up with your doctor. Do you have any other hypothyroid sympoms? Ask for a referral to endocrinologist and ask for additional tests such as free T4 and T3.

[ShayFL]

A TSH of 3 = Hypothyroid

There are new lab guidelines in place:

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And MANY experts think the upper end of normal should be "2".

My TSH was 2.8 and I was hypothyroid. I am on Armour. It greatly increased my energy levels and I sleep like a happy babe. I went on this a year ago. I have only been gluten-free for 6 weeks. So I am hopeful that I have found the last piece to this puzzle. But the Armour helped me tremendously. I am on 2.5 grains (150 mgs).

You need your FREE T3 and FREE T4 checked along with your TSH. Your FREE T4 should be in the upper third and your FREE T3 should be in the upper fourth (with some people needing it a little higher than the top of the range).

You also need your Ferritin checked to see if low iron is a problem for you. I would be willing to bet a million bucks your Ferritin is sub-par. Low B12, Ferritin and Hypothyroid seem to be a manage trois.

[feelingbetter]

Thanks Everyone for your input. You have no idea how great it is to have this forum as I don't have any others in my life who have these problems.

I have decided to quit all supplements except the Now brand betaine hydrochloride and the Health Equation malic acid. I feel these are necessary for low stomach acid.

I am to see my doc next week and should I insist on some thyroid supplements? I am in Canada so I don't know what is available.

My iron was low normal. I can't remember what it was. I have been taking iron pills for the last 15 years. It is still always lolw normal.

[AliB]

I too have been following the SCD but have been allowing just a few small bits to creep in. The oats were obviously a bad idea.

This morning I went back to the doctor and requested another set of tests. This time we had a good chat about it (I know more about than she does!) and she has not only asked for the tTg test again but also an EmA and an IGg plus a rast allergy test for wheat, none of which were done initially.

I am also waiting for an appointment for a gene panel to be done. I am so convinced that this is Celiac and as I have stated in other posts I believe that any evidence of antibodies, however small, is a clear indication of Celiac.

I also wonder if you are not getting 'glutened' through some of the copious supplements you are taking. I took some for a few weeks, but now, apart from a good multivit every day I have just been letting my body get on with the healing process itself. I was concerned that I might be actually making things worse by throwing it out of balance if it ended up with not enough of some nutrients and too much of others. As long as it can absorb what we give it the body should, once working properly, be able to obtain all it needs from our food. Before gluten-free I used to take copious amounts of supplements and they didn't seem to make a jot of difference!

I do make sure I get plenty of good protein (non-farmed fish or wheat-fed animal meat) as my body is needing to rebuild itself properly. Without enough protein the body can't repair itself. As I am a 'protein' metabolic type I can't cope with carbs anyway, so they are not a big loss.

[AliB]

Thanks Everyone for your input. You have no idea how great it is to have this forum as I don't have any others in my life who have these problems.

I have decided to quit all supplements except the Now brand betaine hydrochloride and the Health Equation malic acid. I feel these are necessary for low stomach acid.

I am to see my doc next week and should I insist on some thyroid supplements? I am in Canada so I don't know what is available.

My iron was low normal. I can't remember what it was. I have been taking iron pills for the last 15 years. It is still always lolw normal.

I was taking digestive enzymes with HCL thinking that my problem was low stomach acid but since going gluten-free it has resolved itself and generally (unless I get glutened or eat too much carbs) my digestion is fine now. I can also eat more food than I could when my damage was at its worst. I stopped most of the supplements as I didn't want to 'cloud' or complicate the healing process. At least that way I could then see more clearly what was happening with my body.

Initially I had what appeared to be hypothyroid symptoms but I took some kelp tablets for 2 weeks and it seemed to sort itself out and has been fine ever since.

[feelingbetter]

Thanks Ali- I too seem to do much better on a high protein diet. I crave meat often. I now eat lots of protein at each meal. I just had my breakfast and left out all supps except ones for low stomach acid. Hopefully I will know in a week if my supps are to blame.

This process of elimination can be frustrating.

I hope your testing goes well.

Brenda

[RiceGuy]

One thing that stands out is the pharmaceutical grade supplements. I've read that at least some are synthetic, and not very if at all effective. For instance, vitamin D in the natural form is D3, but the pharmaceutical grade one is D2, which is essentially useless from what I've read. Apparently they do this because they cannot patent a natural vitamin.

Without knowing what you're taking or what forms they're in, I can't even speculate on them. But poor supplements are very common from what I have read.

[ShayFL]

And please ask your Doctor to test you for Thyroid antibodies (all of them). If you have Hashimoto's, then a few kelp tabs will not get you well and in fact can make you worse.