Episodic fatigue?

[RCFR]

Hello, I am brand new -- my endoscopy showed signs of celiac and my blood work came back showing positive for celiac. I don't have any common food allergies and all of my other bloodwork has been completely normal.

It makes sense to me that I have had stubborn GI problems for years and that this could have been subclinical celiac all along. However the one piece that's especially weird is that I have had long stretches of feeling pretty normal, with shorter bursts of time when I could not get out of bed for days -- ranging between 3 - 10 days. I was eating gluten the whole time of course... is this common, for symptoms to be episodic in that way?

I pretty much always had hives, dermatographism, subtle nausea and problems with GERD. But these epiodes have been so strange -- I thought it could be MS, Fibromyalgia or Chronic Fatigue syndrome -- except I always got better -- it never lasted long enough to be diagnosably any of those. Wondering if this fits with others' experiences.

I am having an episode like this now -- one week completely gluten free and feeling horrible. 

[trents]

Fatigue is a common experience with celiac disease. There are more factors involved than what standard blood work can detect.

Sounds like you are not yet making a serious effort to eat gluten free. That would seem to be the next step in determining if your issues are gluten related or due to something else. You won't know until you eliminate gluten from the equation. 

[NNowak]

If you are just beginning down the road of eliminating gluten, and your EGD showed damage, you likely are not absorbing all the nutrients from your food. Long term this brings about deficiencies, which wreaks havoc on your body systems. Exhaustion is one of the main symptoms of most vitamin deficiencies. Talk to your doctor about testing you for vitamin deficiencies. You may need short term supplementation while your GI tract heals. Being able to function and regain your life is an important part of the healing process - physically and psychologically. It will also encourage your compliance with the gluten-free diet. Good luck. 

[RCFR]

1 hour ago, trents said:

Fatigue is a common experience with celiac disease. There are more factors involved than what standard blood work can detect.

Sounds like you are not yet making a serious effort to eat gluten free. That would seem to be the next step in determining if your issues are gluten related or due to something else. You won't know until you eliminate gluten from the equation. 

I guess I didn't make clear that I have been gluten free for over a week now. I've read everything I can and am eating a varied diet of seeds, meats, vegetables, fruits -- lots of whole foods, staying away from too much processed food for now. Bought a new toaster and rubber spatulas, don't share condiments with my house. Could not be more compliant than I am being without evicting my family, LOL.

So, to be clear: I felt great before I stopped the gluten. Mild nausea but mostly had good energy, etc. The episodes of fatigue have happened over the years -- but I had not had one in months, until AFTER I had been off gluten for about 3 days. I'm now 1 week gluten free and need to rest after talking on the phone or doing the dishes, I"m so exhausted. Belly feels good though.

 

Edited November 13, 2019 by RCFR

[cyclinglady]

Many members report withdrawal symptoms.  It is not uncommon to feel worse.  Remember, you are learning the gluten-free diet which has a steep learning curve.  Mistakes will be made and you will have setbacks.  But unlike an allergy, celiac disease is autoimmune.  That means a gluten exposure triggers an autoimmune flare-up which can last for weeks or months.  It can take months to a year or longer to heal.  Why?  Dietary mistakes are made and additional food intolerances may need to be identified.  Learn how to keep your house safe (like not kissing someone who has consumed gluten)

I see your dog.  Is he grain free? 

 

[NNowak]

Another thing to consider is that it takes a period of time for your body to detox from the harmful antibodies so the healing can begin.  It appears you’ve done research on your food and understand the diet, so be patient with yourself.  Celiacs are notoriously low in the vitamin B’s - the B’s give you energy and contribute to cellular regeneration.  I don’t like to go down the road of recommending anything because we really need to do our own research and have a constructive partnership with our medical professionals.  I’ve had debilitating exhaustion for several years, but chalked it up to being a single mother with 4 busy kids and a high stress job.  I was also financially insecure and didn’t dare open pandora’s box.  Well, the undiagnosed vitamin deficiency caused neurological issues making my balance off.  I fell on my steps and ended up with several fractures to my vertebrae, ribs and a punctured lung.  Another issue is the chronic migraines I had for 13 years.  It took over two years and 4 doctors later to be tested for vitamin deficiencies.  The common misconception is that Celiacs should be perfectly fine if they are REALLY compliant with their diet.  A Celiac woman that presents with low body weight is automatically dismissed as non compliant and/or anorexic - blame the patient for the malady.  Once I was able to get tested, it was discovered that I had 0 folate, low vitamin B12 and low vitamin D.  After my third B12 injection my daily headache of 13 years was mysteriously gone.  The exhaustion lifted and my balance issues have improved.  I was furious to learn that migraines are connected with high homocysteine, which occurs with low levels of Folate (B2), B6 and B12.  My PCP preferred to have me on two daily meds and Botox injections for migraines rather than consider there’s a cause behind the headaches.  I also found another issue that’s more serious than vitamin deficiency, but also causes extreme exhaustion.  I had to choose to be thankful for the answers rather than angry for the ignorance of the medical professionals.

Exhaustion is not normal so reach out to your physician and keep pressing until you have resolution.  We have to be our own advocates.  You are on the right path!

[RCFR]

This is all so helpful! AND... *slaps forehead* I just realized that on Saturday I ate breakfast out and stupidly had sausage and didn't know to ask if the eggs had anything in them. This would explain the timing of feeling better at first, then worse starting on Saturday.

I can't believe how stubborn I am sometimes, completely believing that I was doing a perfect job! Yikes! 

SO much good information from everyone -- regardless of whether it was the sausage (likely) -- I am better understanding the way celiac works, the autoimmune aspect in terms of how the effects of gluten hang on past the initial reaction... and also good food for thought about B12 especially since that's been tested as low in the past. SO helpful!!!

[RCFR]

1 hour ago, cyclinglady said:

I see your dog.  Is he grain free? 

My dog IS gluten free -- she actually gave up wheat before I did.  

[leishs]

It takes a little while to get use to not having it, and asking if there is wheat in food, gluten everywhere you go.. dont ever feel bad for saying 'is this gluten-free?' and if they dont know what that is in a cafe, leave. I have pretty much down pat after 4 years, but listened to a doctor recently who said, just have a bit of wheat to see if you still react - stupid me, i listened and did it.. dumb! and taken my bowel 6 months to recover - wont be doing that again..  look at all the ingredients in everything and get to know the numbers. i cant even use shampoo and conditioner with gluten in it. :( 

[trents]

5 hours ago, RCFR said:

This is all so helpful! AND... *slaps forehead* I just realized that on Saturday I ate breakfast out and stupidly had sausage and didn't know to ask if the eggs had anything in them. This would explain the timing of feeling better at first, then worse starting on Saturday.

I can't believe how stubborn I am sometimes, completely believing that I was doing a perfect job! Yikes! 

SO much good information from everyone -- regardless of whether it was the sausage (likely) -- I am better understanding the way celiac works, the autoimmune aspect in terms of how the effects of gluten hang on past the initial reaction... and also good food for thought about B12 especially since that's been tested as low in the past. SO helpful!!!

It's more involved than just asking about ingredients "purposely" put into foods when you eat out. That doesn't rule out incidental cross contamination. For instance, if eggs are scrambled on the same griddle as French toast is cooked on or French fries being cooked in the same vat that breaded fish patties are. It can only take a trace of gluten to trigger a reaction. Some meds use wheat flour as filler. "Malt flavoring" is often put in boxed cereal, etc. Like Cycling Lady said, it really takes a while to get educated about the places gluten can show up in food, including fancy ingredient terminology that obscures the presence of wheat.

You also need to evaluate the risk posed by foods that would seem to have nothing to do with wheat but are "processed on equipment that also processes wheat" like major brand name oatmeal, for instance and most canned nuts as well as a lot of candy products. If you really take this seriously, after a year or so you get to the point where you almost have a six sense about what might contain wheat. 

And after you have really been gluten free for a significant period of time when you do get "glutened" you may find you get violently ill as all tolerance for it is now gone from your system. When that happens, you become very determined to avoid it in the future.

[GFinDC]

12 hours ago, RCFR said:

My dog IS gluten free -- she actually gave up wheat before I did.  

Smart doggie!

I remember getting glutened once early on and it took 6 weeks to get over the symptoms.  Fatigue was a recurring problem. I think part of it was caused by gut dysbiosis.  There are lots of bacteria in your gut.  Some of them actually help digest foods we eat.  Others  are just hanging around for a free meal and to reproduce as much as they can.  They may make gas or unpleasant chemical presents in our guts.  Or interfere with the production of serotonin in the gut.  There's a tie-in to the gallbladder also.  There is chemical signaling from the gut to the gallbladder.

When your gut is in healthy shape you have a good balance of those bacteria.  But when the gut is damaged the bacteria can get unbalanced in the direction of the bad bacteria predominating.    It takes time to reestablish a good bacterial flora in the gut.  Avoiding sugar and carbs can help with that.

At one week into the gluten-free diet you are just beginning the healing process.  The immune system is not easily fooled and doesn't stop fighting instantly.  So it is a good idea to treat your injured gut gently and avoid spicy foods and sugar/carby foods for a while.  But the bottom line is it takes time to get better.  How much time varies and depends on compliance with the gluten-free diet, your individual body, and what you eat.  There's lots to learn about eating gluten-free and celiac disease.  You'll have celiac for the rest of your life so its worth spending some time on learning about it.

If you were local I'd be glad to take you shopping and show you the ropes as far as cooking etc.

Edited November 14, 2019 by GFinDC

[Posterboy]

RCFR,

Newer research has been tying Thiamine to fatigue which makes sense since it important in the krebs cycle...it has been studied in IBS and Chrons for those who have developed fatigue...I also highly recommend Magnesium Glycinate for energy...I take Magnesium to this day...but no longer take thiamine...the hormonesmatter website has a wealth of  information about thiamine...here is the research on Fatigue and it's connection in IBS...https://www.ncbi.nlm.nih.gov/pubmed/23379830 ....I hope this is helpful but it is not medical advise.

Posterboy,

[trents]

Thanks, Posterboy for all your diligent research on behalf of our online community.

[Wheatwacked]

Gluten is also addictive so there are withdrawal symptoms at first. It messes with your head and body.