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Recovery - Rehabilitation (but Still Fatigued!)

thleensd

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thleensd Enthusiast
thleensd
Posted

I went to my 2 1/2 month followup with my GI doc yesterday.

I'm still under weight and fatigued, however, I'm functional now. I can work, but I fatigue easily and often. I've gone from 5-10% to maybe 50% of my desired energy/activity level.

Doc wants me to push myself a little more...but I'm so fatigued when I get home the LAST thing I want to do is go for a walk, much less pick up a barbell (she wants me to put on some muscle mass).

Every time I do something recreational (like, went to Disney a couple weeks ago - took it easy, but still a lot of walking), it takes a full day of reclined rest/sleep and a couple days of light activity before I feel decent again. !

I told her I was concerned that I didn't want to push myself too hard and slow my recovery. She said "you won't". And, I don't want to burn the calories I desperately need. She said eat more. Easier said than done! I'm so tired of chicken and rice! (temporary other food intolerances...I hope)

Mixed signals though, because at one point she suggested I was doing too much (hobbies and responsibilities) and maybe I should spend more time focusing on me and getting better.

Any thoughts? Suggestions? Success stories? I've been an athlete most of my life, and I'm feeling very frustrated that I can't even WALK a few blocks without feeling awful...my poor lonely bike has been sitting in the garage without me for over a year.

She suggested setting small goals. I hardly know where to start.

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Jestgar Rising Star
Jestgar
Posted

Walk.

Take a five minute walk before work, and another during lunch. Go longer when you can and on the weekends.

If you have stairs at work, go up one flight once a day. Go down stairs whenever you can.

It really really does help.

Mrs. Smith Explorer
Mrs. Smith
Posted

I SO know how you feel! If I go for too long a walk or work a really busy shift, Im down for like 2 days! I am only 29 and sometimes I feel sooo much older! Take it easy, you know your body, do only what you can. For me it seems to be getting better slowly. I am 4 mos gluten free with a few accidents. The first thing that I noticed was the amount of energy I had! The problem was that my tiny weak body could not keep up with that energy. Are you taking any supplements? I improved on b12 and magnesium alot. Im totally still on the road, I get a massage every 2 weeks to try and relax my muscles and improve my circulation. The 1st massage I was sore for days and now after like 5 or 6 Im no longer sore afterwards. If you have the cash, get wii fit! :P I swear you will love it. Not only is it light excersice but its really fun so it takes your mind off the fact that your working out! I love it. Yoga is a great, relaxing way to stretch and build muscle slowly. If I get really sore and fatigued I take some extra B vitamins or take a really long, hot epsom salt bath. Arnica is also awesome for sore muscles they have gel or you can take it oraly. I hope this helps. Im in recovery just like you and I think some DR think that as soon as you stop eating gluten, your fine <_< . Unfortunatley, that seems to not be the case. It takes a really long time to heal and sounds to me like you are doing very well. I have definatley come far from where I was a year ago! Be Patient, rest and take care of yourself. Dont over do it! :D Good Luck to you.

lizajane Rookie
lizajane
Posted

please try yoga. it would help not only with increasing your strength in a gentle way (my gym has a class called gentle yoga!) but it can also help with the mind/body connection.

idahoengineer Newbie
idahoengineer
Posted

Have you been tested for B12 deficiency? I was diagnosed a year ago and still was experiencing fatigue. Thought it was my thyroid again, and my doc (not my GI) suggested a B12 test too. Sure enough, thyroid was fine but I had a B12 deficiency. I eat about a dozen eggs a week, so it sounds suspiciously malabsorption-related. I'm taking shots now and feeling better already. I'm with Mrs. Smith - I don't know why they don't test for vitamin deficiencies like this when you're diagnosed - they just seen to think you'll get better immediately. Steph

Gfresh404 Enthusiast
Gfresh404
Posted

I know exactly what you're going as I am experiencing something very similar right now and I have been gluten free for about the same time (Jan. 09). A good vitamin B - Complex is a good idea. And for even added energy, digestive enzymes are a necessity, just make sure you get a good one with a lot of lipase and/or bile for fats. Digestive enzymes have helped me a ton with being able to get the amount of calories I need while still remaining somewhat active. I think without them in order to get the same amount of calories I would have to do nothing but eat and nap. You could also try something called Royal Jelly which I have heard works really well for added energy.

ang1e0251 Contributor
ang1e0251
Posted

I agree that the B12, magnesium and D all helped my energy levels a lot. Get the sublingual B12 (methyl kind). Also are you eating enough dietary fat? It sounds like your diet is limited. You need the fats to support your muscles (like your heart) and nerves. If you're avoiding dairy, you can use some cheeses that work for you, nuts and olive oil. Avocados are very good for you as well as eggs and meat.

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    • knitty kitty
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      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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