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Exhausted And Venting
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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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At a doctor's appt. yesterday she told me that supplementing 1k iu of d/day for a year equals apx. 10 point increase in a year.

Soooo....for us that are severely deficient it will probably take time to get in the higher range of normal, even if we are on high doses. We do generally have absorption issues :).

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Why does your nutritionist have you on a high protein diet? When you are healing the last thing you need is unnecessary restrictions. You need carbs and grains for energy!!! My nutritionist is a college professor in nutrition and she is against high protein diets for a whole lot of reasons, and for someone who has been sick those reasons are all doubled. No wonder you're so tired. Get off the high protein diet and eat carbs!

It's too late for a biopsy. You are already gluten free and unless you have zero gluten issues you will get very sick going back on gluten long enough for a biopsy. A biopsy is looking for intestinal damage, which means you have to intentionally cause destruction to your intestines with gluten to get a positive. You have to eat a lot of it for many weeks to do enough damage to show up on those shoddy tests.

Eat healthy, whole foods, but please eat plenty of carbs to give you energy.

Healing takes time. It took me 6 months to have one symptom free day. Give it more time.

People with autoimmune disease (I'm going to assume you have celiac and the test was a false negative), tend to get dehydrated. I needed to replace my electrolytes for several months, I drank good old Gatorade and it helped a ton. I tried other electrolyte supplements and all of them made me sick.

Hang in there. It will get better.

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I know it sounds easy to add vitamins and minerals....but, really, if you have celiac, you won't be able to absorb these nutrients no matter how much you supplement. If you decide to take Vitamin D, please consider taking Natural Vitamin D from Country Life, because it provides both Vitamin D and A (in the correct ratio) as well as medium-chain triglycerides to help you absorb the vitamins. I took 50,000 iu of Vitamin D for six months with absolutely no change in my Vitamin D levels because I couldn't absorb. However, I've taken only 400 iu of the Country Life brand for six months, and now my level is at 53. This is the highest level I've had in my entire life!!

If your ferritin level is low, you might consider asking to receive intravenous iron--simply supplementing with iron may prove futile if you can't absorb it.

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Also consider counting your calories, you may not be taking in enough if you eats lots of veggies and fruits

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I just got some of my blood results back, and my ferritin has finally gone up for the first time in over a year! I’m so excited! 3 months gluten and free and it has gone up 16 points. Still waiting on the vitamin D results, but I started taking 5000 IU a day last Friday and I have been feeling a little better since Monday, so I’m hoping it is connected. I’ll post back when I find out if I am deficient. My school is putting me in touch with a nutritionist to address the weight loss concerns.

Thank you everyone for your input and encouragement. One of my close friends was just diagnosed with Crohn’s, I feel lucky to have a disease that can be largely controlled through diet. Best wishes to you all and your health!

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I am hacking into your post:) I am a newbie and I cannot agree enough with what the other posters are saying!!! Hydration, high calories, and no cross contamination! I am curious to know what your vitamin levels come back as. Did they test your B levels also and I missed it in your posting?

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My vitamins all came back very good. My ferritin was a 38 (up from 22 in August), my B12 was actually higher than the normal range, and my folate was good too. They’re testing for Vitamin D now, which I have a hunch is low.

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Also my vitamin D is low! It was within the normal range, but at the very bottom. I have a feeling that explains why I have been so tired and achy. Thanks everyone!

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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