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Still Fighting Fatigue 7 Months Post Diagnosis

mommyof4

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mommyof4 Apprentice
mommyof4
Posted

I'm 7 months post-diagnosis & still fighting a lot of fatigue. Had blood test a few weeks ago to check vitamin levels, thyroid...everything looks good. I have to drag myself through the day. How long before energy levels return?

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kareng Grand Master
kareng
Posted

You are a mom of 4? I think that's normal for any mom of 4. :lol: It took me at least a year to get more energy. But it took that long to get my vitamins more normal. Also, I had to move more to build up stamina.

Di2011 Enthusiast
Di2011
Posted

Many of us have additional intolerances. Have you researched/tested for salicylates and/or nightshades? Keep a diary and then post us how things are going. The "other intolerances" threads have been very, very useful for me recognise my salicylate intolerance.

CeliacAndCfsCrusader Apprentice
CeliacAndCfsCrusader
Posted

A good allergist can help. Eliminate other issues, then your body can heal.

If you have CFS or Fibro, (in my case) my experience is that a gluten-free diet helps a lot (but remember that your body didn't get screwed up overnight, it will take time to heal). I had severe fatigue for years, I had to adjust my lifestyle and "listen" to my body. Don't overdue it and your body will cooperate eventually. Good luck, it's not easy, but it can be overcome!

Mateto Enthusiast
Mateto
Posted

....you are getting enough sleep?

I know sometimes it may seem like you're sleeping soundly, but infact you're not. But this doesn't seem to be the case.

Someone told me that when I feel tired, just make a quick movement...maybe jump up and down or run in a circle for 5 seconds, it may sound ridiculous but it worked for me :P

Other than that, it takes different people different amounts of time to recover after going gluten-free. So maybe your body is just taking longer?

Sara S. Newbie
Sara S.
Posted

I'm about 11 months since diagnosis and eating gluten-free, and I feel like I'm just now getting less fatigued. About a month ago I started supplementing with vitamins D and Bs (especially folate and methylcobalamin), and I feel that has made a huge difference.

The B and D vitamins are common deficiencies. Vitamin D deficiency is found in about 40% of healthy people (defined as less than 20 ng/mL, though I've also heard that even above 20 ng/mL is still too low, and we should shoot for a level of about 40-60 ng/mL). Celiacs will likely have even greater incidence of vitamin D deficiency, on account of poor nutritional uptake, especially for fat-soluble vitamins (according to my gastroenterologist), and the lack of vitamin D from dairy for those of us who can't tolerate casein.

Deficiencies in the B vitamins can be tricky. Most doctors test blood serum levels, which basically only tells you how much you're getting in your diet. Few doctors test values from red blood cells: a better measure of how much you actually have in your cells. According to the Framingham Offspring study, 55% of people are low to deficient in B12. If your uptake is poor, or if you're a poor methylator (hetero- or homozygous for the less-active allele of the MTHFR gene), then you'll have a difficult time getting it from your food and/or converting it to the active, methylated form (for both folate and cobalamin).

So, I'm not sure if it just takes some of us celiacs a long time to heal, or if the key for me was the vitamin supplementation, but it seems like it couldn't hurt to either press your doctor for more/better tests of nutrient deficiencies, or even, to try a week or two of supplementing with the methylated forms of B9 and B12, folate and methylcobalamin, as well as vitamin D, and see how you feel.

dilettantesteph Collaborator
dilettantesteph
Posted

Could you be a super sensitive? I didn't get fully better until I went on a whole foods diet.

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Fields Newbie
Fields
Posted

I'm 7 months post-diagnosis & still fighting a lot of fatigue. Had blood test a few weeks ago to check vitamin levels, thyroid...everything looks good. I have to drag myself through the day. How long before energy levels return?

I was 55 when diagnosed and it took me almost 18 months to see a reduction in fatigue. Very frustratng especially with children to tend to. I have two grandchildren, ages 1 and 3 during the day and it can be exhausting. Hope your energy levels improve soon. please check for gluten-free vitamins that "may" help.

MitziG Enthusiast
MitziG
Posted

I went from being virtually bedridden, to couch ridden, to up and about but taking 3 naps a day still, to no napping but having to be careful to not overdo it or I would spend the next week in bed. It was a very gradual process for me over the first year. Now, a few weeks ago I removed all casein from my diet as I noticed it aggravated my acne- and that has kicked the last of the fatigue to the curb! I am up at 6 am and plowing through until midnight with hardly a yawn!

So...you need more time. But you should be seeing some gradual improvement by now I think. If not, them another food intolerance or cc is likely the issue.

mommyof4 Apprentice
mommyof4
Posted
  • Author

Thanks for all the input! The last post about describes my fatigue...at first I was bed ridden(my mom lived with me for 5 weeks as I went through testing & was losing insane amount of weight)...now I still nap once during the day just so I can make it through the evening when the kids are home from school & need me.

When I look back over the past 7 months, I am improving...just not as fast as I want...guess I need to have patience. I think the slowness of recovery has made me discouraged...I just want to be "normal". I try to walk everyday...I used to rollerblade 15 miles at a time. I want to get back to teaching...I work with young children so I need lots of energy & I have taken almost this whole year off since getting sick.

Today I am doing the adrenal fatigue test...saliva & urine. I am also going to a local Celiac Support Group potluck for the first time tonight. I know that I need to "get on" with living as a Celiac but I just really struggle with all of this some days.

Guess I just need to vent my discouragement...thanks for listening!

MitziG Enthusiast
MitziG
Posted

If it makes you feel better it was right around the 7 month mark when I actually NOTICED...hey...I dont think I am quite as exhausted as I used to be! My progress was agonizingly slow. i desperately wanted to be like those people who go off gluten for a week and suddenly feel 20 years younger! Which is why I am grateful for the celiac dx or I never would have seen enough improvement on the diet to warrant "sticking with it". Since I had no choice though, I made it through and am SO thankful now! I really do feel 20 years younger. That last little bit of fatigue that would not leave was bugging me though, and I cant believe that cutting out dairy took care of it. I just did not think dairy was a problem for me at all- if it hadn't been for the fact that I noticed my face looked WORSE when I had milkshakes, I wouldn't have tried going off it. (Vanity is a strong motivator!)If you aren't already casein fre, I would try that as well. The whole leaky gut thing makes a lot of sense to me NOW! Hang in there, it really DOES get better!

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