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Recovery - Rehabilitation (but Still Fatigued!)


thleensd

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thleensd Enthusiast

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

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

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

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

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

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

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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    • trents
      I'm a little confused. In your second post you said, "but these symptoms have been ongoing for a long time before the pregnancy" while in your most recent post you say, "I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea." CBC = Complete Blood Count. This is the typical bloodwork most people would have done routinely with an annual wellness checkup. I would include things like iron levels, various blood cell counts including reds and whites and other infection fighters. CMP = Complete Metabolic Panel. This would measure things like blood sugar, kidney and liver function, plasma proteins and various enzymes. Non cellular things that the body produces. Also typical of an annual wellness check. Have you tried cutting out dairy and oats? These two are the most common cross reactors in the celiac community. I know it must be tough trying to get adequate calories and nutrition when you are pregnant while at the same time eliminating foods that are good sources of those things.
    • Maura Gissen
      They did. I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea. This is what makes me believe it's food related.  I do check all of my food products and supplements and I am very careful about them being gluten free and trying to stay away from corn starch etc. However, I am eating gluten free breads that sometimes have rice flour, yeast, etc. - I seem to do fine with these breads/bread products some days, but then am sick other days.  I have never really had any GI symptoms outside of bloating. My symptoms are dizziness, brain fog, and a general feeling of unwellness or malaise, sort of like when you're going to get the flu.  I have had a lot of bloodwork done over the last three years, but I don't recall doing the CBC, CMP, or a celiac-specific test recently. That's helpful so that could at least provide some insight to see if I'm still being exposed.  Do you see most individual with celiacs having to take a period of time away from even gluten free breads and other cross-reactive foods to let their guts heal? I'm not sure how restrictive to get with my diet again since it's so challenging. 
    • trents
      Did the symptoms commence after you discontinued the AIP diet? Have you checked all nutritional supplements and oral hygiene products for possible gluten content? Have you recently checked all the labels of purchased processed foods in your pantry to check for formulation changes that might have introduced gluten? Historically, when "glutened" did you have GI symptoms or were you a "silent" celiac whose symptoms were non GI. Is what you are experiencing now like what you were experiencing at the time of diagnosis? Have you had recent blood work done (CBC and CMP) and if so, were there any parameters out of norm? I know you have Hashimoto's but you say that is well controlled now? It certainly wouldn't hurt to get celiac antibodies rechecked. Because you are essentially gluten free I would not expect to see any big departures from normal levels but if there are even weak positives it could indicate you are getting glutened from some unexpected source.
    • Maura Gissen
      Hi Trent! Thanks so much for your warm welcome and questions! They do, but these symptoms have been ongoing for a long time before the pregnancy. However, it's hard for me to know what's a celiac response vs. a Hashimotos one. I haven't, maybe it's worth getting those checked again? 
    • trents
      Welcome to the forum, @Maura Gissen! Don't those same symptoms often come along with the territory when pregnant? And then throw in Hashimoto's.  Have you had your celiac antibody levels checked recently?
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