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Exhausted And Venting


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22 replies to this topic

#1 glutenfree015

 
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Posted 01 November 2012 - 05:04 AM

I’ve been gluten free for almost 12 weeks now and I’ve been on a rollercoaster for every single one of them! First it was the stomach problems, then it was the weird shaking episodes, then it was the weight loss. Now it is the exhaustion.

I feel like I’ve got a pretty good handle on what I can and cannot eat, but I’m so frustrated that I’m still having problems! I thought that when I went gluten free I would maybe feel crappy for a few days and then I’d be a brand new, healthier me. I didn’t anticipate 3 months of struggling to figure out what is wrong, with each week bringing new symptoms! I’m on all types of supplements and a whole foods diet-- I’m taking probiotics, digestive enzymes, and a multivitamin.

Right now I am having problems with weight loss, as my nutritionist has me on a high protein diet. My BMI is in the underweight range. New this week as well is extreme fatigue. I’m a student, so I am constantly running around and fulfilling commitments, and I really do not have time to be sick. I don’t know what is causing the fatigue-- I was just home for the weekend and even though I slept a ton I am still tired. I definitely do not have mono. I want to go to the doctor, but I’m not going to be able to until Christmas break! Even if I do go, he does not think I have Celiac since my blood test was inconclusive, and he does not believe in gluten intolerance. I really don’t know what to do.

I’m really scared that something is wrong and I’m tired of feeling sick. Does anyone have any ideas or reassurance?
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#2 SMDBill

 
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Posted 01 November 2012 - 06:51 AM

It sounds like there is still a deficiency of some kind, maybe in a vitamin/nutrient or a remaining absorption issue if the weight keeps coming off. Are you taking in more than you burn through normal activities in terms of calories/fat or is your metabolism on fire and burning it faster than you can bring it in?

Have you tried adding any fats to your diet? By fats, I mean good fats, such as through nuts, dairy, etc? Biggest worry to me would be the weight loss and fatigue, with the fatigue probably tied to why you are not keeping weight on due to lack of absorption. Unsure, but worth asking your dietician and GP.
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#3 mushroom

 
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Posted 01 November 2012 - 07:38 AM

Your multivitamin may not be enough, in fact it almost assuredly isn't enough, if you have any of the normal gluten-caused nutrient deficiencies. Have you had testing done for Vitamin C, B12, iron/ferritin, folate, potassium, magnesium, and have you had your thyroid checked. Any deficiencies in any of these can cause lethargy and fatigue and require more supplementation than a multi (although the multi might keep you from going further in the hole). You really need to get these levels tested, because blind supplementation isn't going to help either. Although you could start with a sublingual B12 methylcobalamine which will not do any harm because any excess is excreted and since it dissolves under the tongue it is readily absorbed. This is the problem with a damaged gut - you can take the multivitamin but there's no way of knowing if your body is actually receiving it in the cells. I take Vitamin D (yes, still) in gel caps filled with an oily substance for better absorption, and I still take B12 shots because I am one of the weird ones who breaks out with sublinguals. And these are just holding my levels stable.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#4 rosetapper23

 
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Posted 01 November 2012 - 09:14 AM

I agree! You may have a deficiency in Vitamins B12 or D, magnesium, or iron...or you may have a thyroid condition. However, I also agree that you may not be eating enough healthy fats, which are essential for energy and proper functioning of your brain. You should be eating organic butter, nuts and nut butters, avocados, and olives on a regular basis. People generally don't understand that healthy fats are more crucial to good health than proteins and carbs--early man subsisted on protein and fats alone, and fats especially were coveted because they provided so much energy.
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#5 AandGsmomma

 
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Posted 01 November 2012 - 09:22 AM

I had chronic fatiuge where I could sleep 12 hours and still need a nap. Turns out I had a pretty severe vitamin B1 deficiancy. I also have a vitamin d deficiancy. I had a multi, 2400 D3 and 100 mg of b1 a day and its getting better. Its a slow process though and we are waiting to see if my numbers are better or if vitamin injections are needed. Can you get a vitamin panel run at school?
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#6 SMDBill

 
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Posted 01 November 2012 - 10:30 AM

I'm not sure if it's much of a valid indicator, but I began supplementing with iron, B-complex (very strong levels), D3 gel (5,000 IU), multivitamin, magnesium (250mg), omega 3/6/9 gel, calcium and probiotics. What I noticed early on was that my stool turned green. That's a positive sign that the iron was absorbed and excreted. When I was glutened I lost my energy again, had muscle weakness and I could tell the iron was no longer being absorbed because it went from green to a medium brown again. I also had steatorrhea at the same time. I stuck to my routine, doubled up on probiotics for a week, and now my stool has returned to a green color so I am positive the iron is once again being absorbed.

In addition to the iron, the B-complex is a powerful one from GNC, covering all B vitamins. When feeling well my urine is almost a neon yellow. When glutened I hardly saw signs of the vitamin in my urine. After a bit over a week from being glutened and feeling better, the neon is back. I take those colorations as an easy signal to know if my body is absorbing. Sure, it's not a medical indicator but it's a bit of an eye opener for me that something is going on. The pain was the first clue, but for someone not feeling pain it could be another way to know if absorption is down.
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#7 cavernio

 
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Posted 01 November 2012 - 11:02 AM

Any doctor worth their pay would do a biopsy if you think you have gluten issues. I strongly recommend this, especially (although definitely not only) since you didn't say the blood test was negative.
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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy

#8 glutenfree015

 
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Posted 01 November 2012 - 11:26 AM

Thanks everyone, I agree with you all on the vitamin aspect. I am going to see if student health can run a vitamin panel, otherwise I will have to wait until Thanksgiving. My parents keep telling me its normal to be tired because I am so involved with school, but it is a very peculiar kind of fatigue-- almost like my arms and legs weigh a thousand pounds and I have to drag my body everywhere. Is that what vitamin deficiency fatigue feels like?

Cavernio, I agree with you there. I had the blood test, and the result was negative--however my total Iga was really low. My naturopathic doctor called a celiac specialist and he said that it sounded like a false negative. By the time I got the results though, I was a week into my first semester of college and would have to wait 3 months to get the biopsy, so I just decided to go gluten free. However, my pediatrician is convinced that I do not have Celiac because I did not have weight loss before starting the diet. It is a very complicated situation.
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#9 ravenwoodglass

 
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Posted 01 November 2012 - 12:15 PM

You say you are eating whole foods. Are you able to cook them yourself or do you have to rely on the dining hall at college? You may still be getting some cross contamination if you are not cooking yourself. Since you are already gluten free it would be difficult to go with an endoscopy for diagnosis. Unless you were constantly being cross contaminated or were very damaged before starting the diet chances are it would be negative with you being 3 months into the diet. You mention your regular doctor is a pediatrician, perhaps it might be a good idea to find a GP to take care of you. If you have insurance you could make an appointment with one in the city where you are at college. Just check to make sure that they take your insurance when you call for an appointment. If you post a query on the Doctor's thread and let us know about where you are located someone may know of a celiac savvy GP or Internist in your area.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#10 flowerqueen

 
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Posted 01 November 2012 - 01:53 PM

I went through similar things to you, with tiredness and shakiness etc. (this is a very simplified version as I was in fact very ill for a long time). I was suffering from malabsorption of nutrients due to celiac. It would be wise to get your vitamin and mineral levels checked, also your thyroid.
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Under active thyroid; diabetic; hiatus hernia; acid reflux; dairy intolerant; arthritis; sciatica due to spine degeneration; diagnosed with coeliac disease November 2011; fibromyalgia; allergic to Thyme & MSG and alcohol. Allergic to TCP antiseptic, and plasters. Taking medication for severe muscle spasms in upper back.
Despite all, remaining positive!

#11 nvsmom

 
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Posted 01 November 2012 - 06:42 PM

Have you had your thyroid checked? Losing weight and shakes could be Graves or Hashimotos (switching hyper to hypo). Thyroid problems can cause the same symptoms as celiac but it is about 10 times as common. If you are having it checked, check the TSH but also check free T4 and TPO Ab if possible. With hindsight I can see that I've had hypothyroid problems for about 15 years but my TSH only went off kilter recently; I am fairly confident that if doctors had actually checked my thyroid hormone levels (free T4) or for thyroid antibodies (TPO Ab) my hypothyroidism would have been detected a decade earlier.

Best wishes.
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Hypothyroid - August, 2012

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#12 glutenfree015

 
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Posted 02 November 2012 - 08:13 AM

Thanks everyone! I had some blood drawn at student health today, they are checking my iron, B12, and folate levels. They didn’t check my thyroid because it was fine back in August, but if the labs are normal than I may ask them to. The doctor feels pretty confident that it is low iron, since I have been anemic for the last year, but I guess we will see. I’m hoping it is a vitamin problem, since that is relatively easy to fix!

Ravenwooglass, I do cook all of my meals for myself and I am very careful, so I don’t think it is a CC issue. I am looking to switch doctors soon so I will definitely consider getting a doctor closer to school!
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#13 mushroom

 
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Posted 02 November 2012 - 08:30 AM

I see in my post previously I mistyped Vitamin D as C -- D is one of the most important vitamins in our bodies and one that celiacs are frequently deficient in. It is one that should be checked - besides all the other functions it controls, lack of D can lead to osteoporosis. I am sorry for the mistake.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#14 glutenfree015

 
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Posted 02 November 2012 - 09:08 AM

Thanks Mushroom. I was vitamin D deficient last year, so I may just pick up a supplement at Walgreens or something. My levels were never checked to see if they got back to normal and I stopped supplementing last spring. I realize it is not a great idea to supplement blindly, but adding an extra 1000 IU a day until I can get home to see my regular doctor probably can’t hurt.
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#15 mushroom

 
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Posted 02 November 2012 - 10:06 AM

Thanks Mushroom. I was vitamin D deficient last year, so I may just pick up a supplement at Walgreens or something. My levels were never checked to see if they got back to normal and I stopped supplementing last spring. I realize it is not a great idea to supplement blindly, but adding an extra 1000 IU a day until I can get home to see my regular doctor probably can’t hurt.


Actually, adding an extra 5,000 iu a day wouldn't hurt. If you were deficient last year and have just gone gluten free you are no doubt deficient again. :)
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator




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