Help! Extreme fatigue

[Jherm21]

I was diagnosed with celiacs disease almost 2 months ago lets say, 7 weeks. I had a negative blood test and positive endoscopy. The doctor ruled out other possible diagnosis and set me on my way of gluten free living. I was also told I had hypothyroid (stopped taking the hormone for it, it was making matters worse for me. I recently went to a rhematologist and told him my aches and pains. I should say I have had a severe stiff neck with swollen lymph nodes on neck for quite sometime on and off for like 4 years. However in august the severity of my neck pain got worse. Recently since I have been gluten free I have noticed pains all over my body. My elbows, my neck, back and knees. But back in october is when a sudden rush of fatigue came to my body. This fatigue has still not gone away it causes me to have severe brain fog and slight memory problems. I dont sleep well 2 hrs at a time over a 6 hr period. And the rhemi told me I have fibromyalgia. Im only 29 could this be? He only touched like 5 parts on my body that I said were achy. Could this be causing my extreme fatigue or confusion or is it still just the celiacs? Any advice would help. I just feel so old yet suppose to feel 29. I dont want to tackle another disease like fibromyalgia. But this fatigue is so so so debilitating. I cant drive I cant work I cant finish school need help!!

[GFinDC]

Hi Jherm,

Has the doctor tested your thyroid levels?  Hashimoto's Thyroiditis is an autoimmune condition that is more frequent in people with celiac disease.  Hashi's attacks the thyroid and damages it via an autoimmune attack.  There is a blood test that can be done to identify TPO antibodies that are present in Hashimoto's.

The attack on the thyroid can cause swelling in the throat and pain, and at some point low thyroid levels.  Although it is possible to have both high and low thyroid hormone levels at different times with Hashimoto's.  It might be something to consider having tested.

[cyclinglady]

There are so many different symptoms for Autoimmune disorders that overlap.  Seven weeks into the diet is not enough time based on most member's experiences.  It can take a year or longer to feel better.  Have you seen ANY improvement?  

Thyroid fatigue is awful.  Are you sure the thyroid hormone replacement was causing you issues?  What exactly were your thyroid results?  

[cyclinglady]

Ask your doctor for synthetic thyroid.  I am a huge Armour fan (as is my doctor), but it might not be the best for you.  Going without thyroid replacement is crazy if your lab results are out of range, in my non-doctor opinion.  

[Ennis-TX]

Two of my customers have fibomyalgia, they both lead active lives. One of them has talked about how they found taking a bunch of digestive enzymes and having smoothies packed off of fats. protein powders and whole foods has been a life saver. Perhaps see about your levels of different nutrients and see if you have a deficiency. You might have enzyme issues with breaking down foods on top of the vili blunting associated with celiac. This could lead to a lot of issues with getting the nutrients you need from foods and require supplementation of certain vitamins and minerals.    Normal ones are magnesium, B-vitamins, Iron, Niacin, D, E, and various others and can differ from person to person. I will admit the magnesium is a big one for me it is used by the body for nerve, bone, and cardiovascular functions and being low in it can cause all kinds of issues. Again see about talking to your doctor or seeing a dietician about these. I did a bit of reading and seems that if the enzymes are issues with breaking down fats, which leads to issues with fat solvable vitamins being deficient in the body as well.....Seems like a cascading nightmare.

[Jherm21]

All your input sounds great. Thanks guys! I will look into the magnesium and other vitamin levels. The thyroid hormone was causing both times I tried it (synthroid) and (armour) I had an increase in my heart rate and it was driving me nuts. I did get my antibodies checked I asked if it was hashimotos and her response was maybe maybe not?! My antibodies were in range because I saw the labs so I take it as a no. But can a thyroid just a slight bit off cause symptoms that could possibly mimic fibromyalgia. I am Working with so many doctors. Its very frustrating. 

[cyclinglady]

Well, without elevated thyroid antibodies, you can rule out autoimmune thyroiditis ((Hashi's or Graves) for now (anything can develop in the furture).  But your doctor prescribed thyroid replacement, so she must suspect hypothyroidism based on lab results and not just symptoms as those can be so vague (I never had weight gain, hair loss, etc. when first diagnosed with Hashi's. ( Just like I was only anemic when I was diagnosed with celiac disease).  Again, one day of thyroid replacement (even if too much) is not going to make your heart race.  I think you said that the heart racing, etc. occurred both with and without thyroid replacement.  My money is on gettting glutened.  Look to your diet.

Your thyroid, in my non-doctor opinion, would have to be way off for symptoms to be severe.  

All your symptoms can be attributed to celiac disease.  With time and a strict diet, those should improve or go away.  You might not even have Fibromyalgia.  I would wait six months and to a year to see if muscle pain improves.    Then consult with a fibro expert.  

[cyclinglady]

Consider a second GI opinion.  Get all your lab tests and present them.  A negative blood test, yet positive biopsy could be many things:

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But...it would be prudent to continue the gluten-free diet for six months or longer.  Your doctor may be trying to determine if celiac disease is actually the root cause.   It certainly will not harm you.  Check too, if you had a complete celiac blood panel.  

[Jherm21]

Your right. Its a good idea to get a second opinion or atleast ask my doctor to truly confirm it. It seems like the body aches have gotten worse being on the diet. Ive noticed some differences on the diet that are positive but very subtle symptoms. Im super fatigue and have severe brain fog like nobodys business. Im beginning to think I need to seek a functional doctor instead of going to every doctor under the sun. In the mean time. Does anyone know of a good otc pain med. Dont want to take an nsaid if those can cause intestinal damage. Does anyone know about tylenol strength? Is it safe?gluten free? 

[cyclinglady]

 Can not help you with the medications as I am allergic to ALL OTC pain drugs.  Best to ask your pharmacist and call the manufacturer.  This list is maintained by a pharmacist who advocates for celiacs.  Still check every label yourself.  Brain fog?  Ask your pharmacist.  It is hard to figure out things when you are not well.

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Just keep in mind that the gluten-free diet has a steep learning curve.  That means in the beginning, you will most likely get gluten contamination either by misreading a label or eating food prepared by someone else.  Each gluten exposure causes a celiac (autoimmune)  flare-up that can last for days, weeks or months.  Fortunately, we know the source/cause of a flare up -- gluten.  My poor MIL had multiple sclerosis and she had no idea what triggered her flare-ups and therefore could not prevent them.  My little niece has Crohn's, which like every other autoimmune disorder, has no known trigger.  

Again, seven weeks into the diet is such a short time.   

FInally, look for ways to simply your life and ask for help.  

 

[GFinDC]

Also consider that wheat, rye and barley, while the common problem foods for celiacs are not the only foods that can cause the autoimmune reaction.  Some of us also react to oats the same way.  So it is wise to eliminate oats also for a while in case you are one of those that react to them.  Many "gluten-free" foods do contain oats, but if you are an oat reactor you aren't really eating gluten-free if you consume those products.

[knitty kitty]

Good nutrition is very important.  You may want your doctor to see if you have any vitamin deficiencies.  This article explains how thyroid disease issues may be caused by nutritional deficiencies. 

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And another article on how vitamin D can cause body pain and fatigue.  

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I can attest to how low vitamin D can make one feel achy and foggy.  Once I got my vitamin D levels up, I felt much better.  

Please consider discussing nutritional deficiencies with your doctor. 

[Jherm21]

What is ideal for vitamin d levels? I know every lab is different for deficiency. 

[knitty kitty]

Yes, opinions on optimal vitamin D level varies, too.  

People who live in the tropics and get plenty of sunshine have between 70 and 100nmol/L.  But some recommendations say 50 is enough.  

I don't feel well if mine is under 70.   And an article for you, of course. 

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Note the section "Groups at risk of deficiency" which mentions Celiac Disease.  

Hope this helps!

 

[Jherm21]

Thanks for the input. My last lab for vit d was 34. On the lab range here 29 is considered deficient. Maybe it will help if I supplement 

[knitty kitty]

 I believe you'll feel better.  Get a D 3 supplement.  D 2 is the synthetic form of vitamin D and may not be a form the body can use as easily as the D 3 form.  I take a brand called "naturewise".  

You may also be low in vitamins A and E as well.  They are fat soluble vitamins like vitamin D.  Celiacs have trouble absorbing fats because of damage done to the small intestine where most vitamins are absorbed.  

Prediagnosis, my vitamin D level was 13.  I was in bad shape.  Once I started taking vitamin D supplements, my body craved more of it and I ate them like candy! It was a very strange craving, but it leveled off once my vitamin D level rose in a few weeks.  Now,  I feel so much better!  Hope this will help you, too.

 

 

[Jherm21]

Thank you! Just had recent blood work and my b12 has dropped significantly along with my vit d. So will definitely be supplementing. 

 

[deb-rn]

Puritan's Pride vitamins online are very reasonably priced.  They don't have every one we use though.  We supplement with Vit D3 2000mg daily, Fish Oil(with mercury purified out) at 2000mg daily, Curcurmin(Turmeric) w/ peperine 3000mg daily divided for pain/inflammation/immune support.  If your thyroid is stressed, you want to filter out the chlorine and fluoride out of your water.  They compete with Iodine in your thyroid.  We just began taking an Iodine supplement(liquid) because we eat only pink Himalayan salt now and it isn't iodized.  I also read that  standard table salt loses its iodine levels in just a couple months after being opened, so you're probably not getting enough there either.  If you happen to eat kelp or dulse you're getting enough, but that isn't a common food for most people.  The more medical research I read, the more I realize we have gotten away from real, whole, natural food!  THAT  is why we are all sick.  MS and Crohn's are both aggravated by gluten & sugar/carbs.  The dramatic rise in most of our modern diseases correlates with the increase in processed foods with added sugar, starch and chemicals.  Getting back to basics is the best way to overcome it all.  Corn is another big trigger for people.  Remember, it could also be the pesticides on foods that you react to.  We have switched to organic for some of our food.  We also grow and freeze veggies that we use no pesticides on.  Some people have miraculous recovery by just going gluten free.  Some do not.  One author said "gluten free junk food is no better for you than regular junk food".  It's still full of high fructose corn syrup, dyes, chemicals and now even higher in starches/carbs.  When you stick to whole foods, you can eliminate the triggers you didn't even know affected you!

Debbie