Still Fighting Fatigue 7 Months Post Diagnosis

[mommyof4]

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?

[kareng]

You are a mom of 4? I think that's normal for any mom of 4. 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]

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]

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]

....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

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.]

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]

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

[Fields]

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]

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]

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]

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!