Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

snow white

Total And Complete Exhaustion

Recommended Posts

Hi, I could really use some suggestions. I've been dealing with stomach issues that had gotten worse over the last few years. Also lack of energy. Doc gave me a test for anemia. So now I am taking high doses of iron (has been 2 months now). Doc also has me taking extra B, D and Folic Acid. Also tested for gluten allergy and I registered highly sensitive.

So ok I go gluten free. The fruits and vegetables I couldn't eat before I can eat now. It was the gluten causing all my stomach issues.

Now that the stomach is good the exhaustion is still terrible. I noticed that after starting the gluten free diet that I had terrible exhaustion not the general fatigue from before. Came home from work and went to bed immediately. Slept through the memorial day weekend. Missed some sporadic work days when exhaustion was overwhelming.

I've added a gluten free protein shake to my diet. I eat a small amount of gluten free bread (but when I don't I still have the exhaustion problem). Eating very healthy for the first time ever and feel horrible. Making it to work and able to stay up in the evening for a couple of hours but that is a struggle. Even with extra sleep I am exhausted. I get ready and get to work and feel totally exhausted but the time I get to the office. This does not feel normal at all. I'm eating healthy. I eat fish but not red meat or chicken (not a new change).

Any suggestions? I was at first wondering if it was lack of protein and at first felt a tiny bit better with the shakes but that didn't last. Tried adding a little bit of carbs and that didn't work either.

I did go back to the doctor about a month ago and she told me it takes at least 3 months to get the iron level up to where it should be. In the meantime I am barely getting thru the day. Sleep most of the weekends. Not depression, just total and complete exhaustion.

Thank you for listening and for any advice you can share.

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


That sounds awful. I remember being that tired when I was eating gluten.

Have you had your thyroid checked? Also Epstein-Barr virus will do that. I have a friend whose fiance had it and she was knocked out for weeks. Some folks around here swear by sublingual B12 too.

Share this post


Link to post
Share on other sites

i too was super tired just after going gluten free. i went to bed hours earlier than i normally did and just felt like i was dragging all day. if i closed my eyes i felt like i could immediately fall asleep ... if only for a short little nap. i figured it was because of my insomnia but after seraching around here i found out others had the same type of "reaction". hopefully it will subside for you soon. how's your thyroid? did your doctor check it?

Share this post


Link to post
Share on other sites

Exhaustion was one of the symptoms that I had before diagnosis that went away when I ate gluten free. It still comes back when I get accidentally glutened. You either need more time to heal, or you need to make you diet more gluten free, or it's something else as mentioned above.

Share this post


Link to post
Share on other sites

Hi, thank you for the suggestions. Yes I've had my thyroid checked more than once and it is fine. I will try adding the complex carbs - thank you. I eat almost 100% at home or home prepared so I don't think I've been glutened again but I'll make sure to keep a better eye on it just in case.

This is has been so hard. The up side is no more stomach bloating and no more stomach issues. Just need the fatigue to go away and things would be much better. Thank you everyone.

Share this post


Link to post
Share on other sites

Hi, I don't tolerate iron therapy so you might want to stop the iron for a while and see if the exhaustion decreases. Did your Dr do any tests to see if you have Celiac Disease? If you have been gluten free for a while the blood tests may be negative but there are fecal tests at Enterolab.com which are more sensitive than the blood tests. Sometimes people have both an allergy to wheat and the autoimmune antibodies of celiac disease. I think I read that iron therapy is not recommended for Celiacs - you can check that out. Another condition which causes people to be anemic is Hemachromatosis and iron is definately not good for these people as they have way too much iron in their bodies despite the anemia. Your Dr can test your ferritin level or the Total Iron Binding Capacity and can also order a genetic test.


DQ6/DQ8

HLA-DQ B allele 1 *0602: HLA-DQ B allele 2 *0302

Gluten free and Cow Dairy free since 2006

Share this post


Link to post
Share on other sites

Hi,

You are not alone! I definitely recommend following up on suggestions that others have made, but the exhaustion may just be your body's response to healing. It takes a lot of energy to recover from something as debilitating as celiac/gluten intolerance. Our poor bodies have been essentially poisoned for years. Our bodies hold out on gluten the best they can until they just can't sustain normal function anymore, and we get sick. Doctors say it takes up to 2 years to completely recover.

I'm 3 months gluten-free now, and I'm still dealing with fatigue. It's lifting slowly, but it's literally week by week. The hardest part is that doing more results in more fatigue (and neuropathic pain). I had a few days where I felt great three weeks ago. In response, I toured a garden, met friends, walked a lot. Now, considering that a normal weekend a year ago would have included a twenty mile bike ride, this seemed like nothing to me. I was exhausted for the next 5 days. My acupuncturist told me that, yes, I overdid it. My body is still healing. She said, if you could walk around the block last week, then - even if you feel better - try just walking around the block twice this week.

The exhaustion was at its peak during my first 3 weeks off of gluten. I could barely get off of the couch. It felt like I had been drained of all energy. It was horrible!

I hope you feel better soon!

lucia

Share this post


Link to post
Share on other sites

It could well still be the anaemia - do you know what your blood levels are? If so, if you post your level (and the reference range of the test) it can give us an idea of how bad it is.

I have had a lot of problems keeping my iron and B12 levels up for about 4 years now, and I have become an expert on my symptoms. For me, the iron deficiency starts off with being a bit more sluggish in general, by the time it's quite low I am falling asleep at 4-5 pm and dead on my feet, brain fog, don't have enough energy to care about anything. B12 is a bit more weird, tingling in the limbs and a slightly out of body feeling, as well as general weird mood swings.

I have not been able to tolerate any iron supplements yet, they cause terrible stomach upsets no matter how small the dose, and I have tried at least 7 types, pills and liquids. You didn't mention how you are tolerating the iron. It definitely does take a few months before your levels improve from the pills (I;ve seen it in others). If you are gluten sensitive it could also be that you gut isn't yet able to absorb the iron you are taking. Also, I'm not sure if you've been given advice on taking your iron with vitamin C to help the uptake, and not to have calcium supplements soon after.

I have ended up needing iron injections. To be honest, they are painful and a lot of doctors no longer give that particular type of injection, but luckily mine does. If not for the injections I have no doubt I would be gravely ill by now. If you have a good dr, raise the option with them. Drs dont usually go for it as an option unless you can't tolerate the iron supplements and are quite bad. Also, be aware that there is a small risk of anaphylaxis with the first injection, a good dr should monitor you for that but my old dr didn't!

Also, if you haven't already, get your B12 and folate checked, as these also cause anaemia. You didn't mention whether the dr checked your ferratin (iron stores) or just your circulating iron. These are both important to know.

If you are tolerating the iron pills, then keep at it for a couple of months, make sure you are doing everything you can to encourage the body to absorb the iron. Get regular blood tests to make sure your levels are going up properly. If not, get to the injections if you can!

Good luck!

Share this post


Link to post
Share on other sites

I was exhausted, too. Took me about 6 months before I could make it through the day without needing a nap. The process of your body healing itself is a big one. Be patient, you didn't get sick overnight.

I noticed big jumps in energy when i took B12 and then later when I started on vitamin D. I had my thyroid checked 2 or 3 times, it was always normal.


Be yourself, everyone else is taken.

Oscar Wilde

Gluten free November 2007

IgA Deficient, Neg Bloodwork, Double DQ2 Positive

Dietary and Genetic Diagnosis June 2, 2008

Soy free Jan 09

Share this post


Link to post
Share on other sites

Thank you everyone. It really helps to not feel so alone. I'm taking the iron 325MG twice a day with vitamin C. I was taking once a day but my iron was still very low. No stomach issues as long as I take the vitamin C.

I don't know if the ferrtin levels were checked. I will find out. I'm taking vitamin D, folic acid and B supplements. I've had my thyroid checked more than once over the last year and it is always good. I took two naps today (it's a Saturday). Then did minimal housework and am dead tired again. The thought of going around the block for a walk is too much. My husband is concerned about how much worse I will feel with my body getting no exercise at all. I'm just too tired to even think about it.

I'm trying to eat different things and see what I feel best eating. So far no difference in trying different foods. I did test positive on the gluten blood test.

I can't imagine feeling like this for 2 years like Lucia mentioned. It's been 2 1/2 months and I don't feel better at all :(

Share this post


Link to post
Share on other sites

I've been tired too and cruising articles on chronic fatigue as I wait for my thyroid medicine to kick in. One interesting research direction says that gut inflammation increase mucosal permeability and lets bacterial toxins through to your bloodstream, which triggers inflammatory pathways and causes fatigue. This fits with a new gluten-free diet because there is intestinal damage, and you're shifting around the "food" for your gut bacteria as well as yourself with a new diet.

One study used a probiotic to help with anxiety, and another used mild natural anti-oxidants, glutamine, N-acetyl cysteine, and zinc. The probiotic they used is the bacteria in Yakult yogurt drink. I'm going hunting for Yakult tomorrow as I was on an antibiotic about a month ago for bronchitis and I'm wondering if it messed my gut flora up on top of the low thyroid.

Share this post


Link to post
Share on other sites

I have stress and crashing fatigue constantly at the moment - migraine etc :(

I am fed up and so is my husband. I know my diet isnt perfect - its gluten-free but not healthy at all. I've been working very hard and been very stressed, if I'd had gluten it would be unbearable and uncontrollable. :unsure:

I cant wait until my new kitchen is done after we gut it next week and then I can have a proper break!!! The gluten area in the new kitchen for hubby will be strictly controlled for my peace of mind too yippee!!! :rolleyes:


I never said I was sane !!

Juppygirl

Share this post


Link to post
Share on other sites

I can't imagine feeling like this for 2 years like Lucia mentioned. It's been 2 1/2 months and I don't feel better at all :(

Hi snow white,

Don't worry, no one feels the same way over 2 years, even if it takes that long for *all* the damage to heal. Know that the damage is reversing with every day that you don't eat gluten. You'll start feeling better soon.

It's like the Beatles song: "getting better all the time ... " :)

Share this post


Link to post
Share on other sites