How Long Will Fatigue Last?

[mommyof4]

This is my first post to this sight...although I have been reading postings for the past 4 months...so bare with me on the details. I am grateful to have a place to learn & ask questions...especially as a newly diagnosed Celiac. Until 5 months ago I didn't even know what "Celiac Disease" was. I went from being a healthy(or I thought I was healthy) 39 year old Mom of 4 to VERY sick quickly. I was in the E.R. 3 times with abdominal pain & admitted to the hospital. I've been through ridiculous amounts of testing...colonoscopy, endoscopy(3), CT scans, MRI of brain & abdomen. I lost 22 lbs. in a few weeks time & spent the first 3 months shaky, nauseous & getting I.V. treatments for dehydration almost weekly. I was diagnosed with Celiac Disease through the endoscopy's & gene test.

So, with all of that said, my life has been turned upside down. I was really overwhelmed at first because of the major change in diet, but since I had absolutely NO appetite from being so sick, it was easy to give up some of the foods I used to love...like Oreo cookies! I literally lived on scrambled eggs & bananas those first months.

After learning that Celiac is hereditary, we had our 4 kids tested with the Celiac Panel & Gene Test. 2 of our kids are positive...haven't done the endoscopy yet on them...which is a whole other topic. I am determined to make this transition in our life positive...and I am learning to love to cook...the food is sooo much better when it's homeade & I also can control what goes in our food.

Here's my question...it's been almost 5 months since I have been gluten-free & I am still fighting fatigue. Is this normal? When I say fatigue, I still nap almost everyday. I don't have the shakyness anymore although I am sometimes sort of dizzy/foggy. I also have a "rough" day occassionally where I can do nothing. Before I got sick I could rollerblade 15 miles at a time...now I can barely walk 1 mile. I am feeling frustrated & I have no idea what's normal & what isn't.

I think I also am just feeling overwhelmed...any suggestions? Thanks for your time & input...

[gluten free overseas]

Oh my gosh!! Your story is almost identical to mine. It's been a whole year, and I still get tears in my eyes thinking of going to the ER over and over, going through ALL those tests you mentioned, being on IV and morphine... terrifying. And all the while, nibbling on crackers and pretzels, which I thought people who are nauseated are supposed to eat!! And then... to discover that I've been unknowingly poisoning myself with gluten all these years. I'm still trying to come to terms with it. Give yourself time, I'm telling myself that advice. I don't know when I'll ever be "over it" but one day, maybe I won't think about it so much.

A lot of people who are celiac or gluten intolerant have other intolerances too. Have you tried testing for other things or tried an elimination diet? I have now eliminated soy, dairy, eggs, and some nightshades out of my diet (at least for the time being... don't know if I can reintroduce them). Now I have discovered that white sugar and high fructose corn syrup makes me super fatigued, even a teaspoon in my coffee just whacks my energy levels (about an hour or two after eating it). So I'm switching to honey and molasses for everything for the time being--I know they are still "sugars" and high in calories, but they don't fatigue me so badly.

Really, it has taken me this long to really truly accept that a whole food, clean food diet is the way to go--and artificial flavors, dyes, genetically modified foods (like wheat!) and refined sugars are the devil. Like you said--controlling what goes into your family's mouths.

Both of my boys can't have gluten either (and one is casein and egg intolerant). It was pretty hard (we cried together!), but after a year, I can see that they have a pretty healthy relationship with food. It's like their mindset about food has changed. They insist on eating chicken or carrots for snack--I had no idea how often (in my gluten eating days) I whipped out crackers or some other packaged food snack where the box promised "wholesome goodness" but was just jacked up on sugar and gluten. It's like they listen to their bodies for what they want to eat, and I NEVER did that ever before going gluten free because gluten so messed with my body and mind that I was just reaching for whatever refined snack would give me enough energy to make it through the next task. It's hard work. My mother said to me, "It's like you're Little House on the Prairie!!" what with making so much from scratch and grinding my own buckwheat etc. Totally worth it though. Totally worth it!

[Metoo]

Hello!

You should get your vitamin levels checked, when I was having severe fatigue problems, I found out I had a vitamin D deficicency (severely deficient).

I am struggling once again with fatigue so I went back to my doctor for another vitamin D check and a thyroid check.

[mommyof4]

Thanks for both replies. My vitamin levels were checked a couple months ago...when I was first sick, but I actaully was thinking about having them rechecked as well as my thyroid. My doctor had mentioned that sometimes the thyroid gets a little messed up with such a severe change in the body.

What a journey this is...

[Lisa]

Hello and Welcome! We always love it when people "out" themselves.

My story was very similar to yours. I had to come here and look up what Celiac Disease was...

The first step is to check your vitamin levels, as mentioned previously. I was talking B-12 injections weekly for a month, then one a month for two or three. It helped me tremendously!!!!

It can take several weeks, months or even years to heal completely with a strict diet. Be patient and diligent and try to be grateful that the road to good health is a diet change. If you are having a difficult time, we are here to guide you through your journey.

Keeping a food diary is always good advice. It can help you pin point and issue, should one arise.

Since a couple of your children carry the gene associated with some autoimmune issues, there is no guarantee that they will every develop Celiac. If I recall, only 30% of the people who carry the associated genes, develop Celiac. Watch them for growth and development and have them tested annually. There should be no need to be gluten free outside your home. But, that's a parental choice.

Again, welcome and feel free to ask away!

[CeliacAndCfsCrusader]

I too was severely deficient in Vitamin D. Have all of your levels checked.

Keep the faith, it DOES get better.