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Half-Year Follow-Up: Peristsing Fatigue Attacks
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Had my follow-up with my GI doctor last week.  My blood tests come back pretty much perfect- I test like a non-celiac.  So, hooray for that- I can be pretty dang confident that I'm doing the gluten-free thing correctly.
 
The downside of that is that the symptoms which have persisted probably can't be attributed to gluten any more. 
 
The stomach upset, I suspect is from artifical sweeteners (the fact that when I cut back on them, I feel less stomach upset, probably confirms this).  I think I may be having withdrawal from them, though I don't know if that's supposed to be possible (does that sound crazy?  I had a lot of them in my diet, and for a long, long damn time).
 
The bigger issue is that of the attacks of sudden-onset fatigue I keep getting.  They often act exactly like low blood sugar- both the symptoms, and sometimes the cure (sometimes, eating something will perk me right back up, especially something with easily-accessible sugar).  A couple years back (when I was starting the hunt for WTF is wrong with me, and hadn't figured celiac out yet), I did get checked for diabetes, thyroid, and anemia.  Fine (A1C average blood sugar was something like 94, though... hmm...), fine, and a little bit/borderline, but not a ton, respectively.  So I'm assuming that those probably aren't the causes, as I had the same tiredness issues then.
 
So, I'm a little happy, a little exasperated, a little worried.  My GI doctor pointed out that autoimmune disorders tend to run together, and the tiredness might be a symptom of another one.  She said to talk to my primary care about it, which I will at my next physical (which is in August- she books very far out, and this doesn't seem worth a sick visit, as it's a persistent annoyance rather than an emergency or something new).
 
Could also be things I already know, for all I know.  I have asthma but I try not to use my inhaler unless I really, really need it.  I have allergies and the pollen is ridiculously high where I live right now.  I do tend to run on kind of a sleep debt- but it's there even after I "catch up" for a couple of days.  I know I tend to put demands on myself physically and mentally and sometimes don't realize how much I ask of myself till I look back on it and wonder WTF I was thinking (this can happen even when I try to account for it, it's like Hofstadter's law, lol).  And (if this means anything) I know my blood pressure is consistently low- good-low, but, I have to say, I was shocked that when it was taken at my last exam, it wasn't at least a little high, because 1. I felt a little anxious and 2. I have sort of cringeworthily increased my sodium intake (partly knowing that I have such a low baseline blood pressure and am young enough that it woudln't kill me quick, and also knowing pathologically low BP is something my mother had a few years ago).

 

Anyway, ramble.  God, the tiredness is frustrating.  Makes me feel weak and pathetic.  :(

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You might look into whether you have sensitivities to other foods including gluten free grains - hypoglycemia-type symptoms and persistent fatigue very common with that - best test for sensitivities is the MRT

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Get a regular bed time to rule that out. ^_^

 

Ask your doctor to do an ECG heart test and thyroid blood tests.

 

It could be a reaction to other foods.

I have several food intolerances.

Dairy is often a culprit with Celiacs.

 

Good for your for being so disciplined with your gluten free diet.  :)

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Look, there's no other way to say this.

You are not like other people. You have an autoimmune disease. It stresses your body. You (an AI person) can't live well, the way you're doing it. Think of it like a weekly budget. You get $7 per week. If you spend all $7 by Wednesday you're broke. Only spend $1 (one days energy) per day). Don't go broke.

Yeah, you're young. But that isn't enough.

Yeah, you're gluten-free, but that isn't enough.

Sleep, schedule, ditch any food that bothers you. Try some allergy meds. Get a workout schedule.

My hba1c results are measured in a rage under 10 - are you sure you don't mean 9.4?

My doc says hypoglycemia is a warning something is wrong. It means -"hey idiot, look at me - you're screwing up and if you don't fix it I'm going to screw your body up real bad".

LISTEN.

And you need a thorough thyroid work up:tsh, free t3/t4, reverse t3, tpo ab. Could be your thyroid, could be lifestyle.

And most people's bp isn't sodium reactive.

You're doing great so far with gluten-free. Take the next steps. Managing AI is a learning process.

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I have a relatively regular bedtime, I am just often off by half an hour to an hour, and to my understanding sleep debt is somewhat cumulative.  I should be more stringent about it, but it is difficult with how much I work and do.  I'm not staying up till one in the morning then getting up at 5 or anything like that, though.  I already have a regular workout schedule.  I already said I got my thyroid levels tested, though I can request a more comprehensive workup.  I don't react well to allergy meds (I've tried).  :/

 

94 was my average blood sugar level, not my A1C score itself.  The lab wrote both on the document I was given.  Though, looking this up a bit more, I think I've talked to too man people with diabetes and have been trained to overestimate what blood sugars ideally ought to be.  If I'm averaging 94, I'd have to be getting spikes in order to also be getting clinically significant drops, I think.

 

Is there a full name for MRT, or should my doctor recognize the name of it easily?

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So, first physical coming up since celiac dx.  I could use some advice on what blood tests to ask for.  There's some good suggestions on this thread already.  Any other things to look for (vitamin deficiencies?  other commonly linked AI disorders?)

 

Thanks guys!

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This is probably silly, as you may have checked it already, but what are your Vitamin B12 levels like? 

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My fatigue finally cleared after I eliminated foods I was intolerant to, and took B12 and Enzymes.  Have you tried those?

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My fatigue finally cleared after I eliminated foods I was intolerant to, and took B12 and Enzymes.  Have you tried those?

Do you know which thyroid tests they did the last time? What you're describing sounds an awful lot like thyroid problems, especially early on when things go back and forth with Hashimotos. You are unbelievably exhausted, but then go through a period of heart racing, anxiety when the thyroid tries to make up for the lack of hormone, then stops again. It can make you feel like you're going nuts. If you get only the TSH done, it can show normal levels because of this, depending where you are in the cycle. Like those above stated, you need to get the full thyroid panel. Hope you feel better soon.
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OK, so, I will ask for (or at least discuss):

-full thyroid workup (not just TSH, which was all it was before- will mention AI/Hastmoto's concern)

-Vit b12 levels

-CBC

-Vit D level (I'm assuming)

-MRT blood test for other sensitivities (does this test tell you *what* you're sensitive to, or just *if* you are?)

(additional, from Newbie FAQ):

-CMP, SED RATE, IRON/FERRITIN levels, Folate levels

 

Asking for an ECG seems a little... excessive?  But will ask my doc if I should have any worries about my heart.

 

Anything else I'm missing?

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And as an update to the fatigue issues- they *are* actually getting better.  It's at least partially contingent on stress, sleep, and diet, but *I'm* getting more able to recognize things like "Oh hey, I feel kind of down and moody all of a sudden because it's 11pm and I need to start heading home and get some sleep."  (Knowing what "hungry" actually feels like may come at *some* point, lol, though it's still usually "I'm tired.  Is this a sleep or a food thing?")

 

Also, they're getting *better* and less frequent but are not totally gone, and I also sometimes do still get dizzy spells.

 

That said, I don't want to blow off the rather alarming symptoms I was having as recently as May just because they are right now getting better (especially since I only get the one physical per year).  If it really was just and overall health issue, that's fine and good, but I'd like to have the labwork done to more firmly be certain.  I had one medical problem screw my life up for 26 years, and I'm still kind of amazed by how much different I feel physically *and* mentally now that I'm gluten-free.  I don't want to miss another thing that I might be able to fix and feel even better.

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Your story sounds like mine. Sometimes I'd feel fine, others I'd have problems that didn't seem to related to anything I could identify.

Low vitamin D appears to have been responsible for the sleepiness and low B12 the abdominal pain. The B12 has been fairly easy to supplement with gluten-free sublingual tablets, a fairly high dose tablet once a day. The vitamin D has been a little slower to respond though I also wasn't as diligent with those supplements. And I've been trying to eat more foods high in iron so that I don't have to take as many iron supplements, knowing that too much iron is just as bad as too little.

I'm doing follow-up appointments every few months to continue to monitor my levels at least until I get them up higher and have figured out the affects of dosage levels on me.

Also, make sure to get the actual numbers of all of your tests from your doctor so that you can do your own research. The accepted "normal" levels for both thyroid and vitamin levels are often more broad than they should be. Many doctors still follow old guidelines despite newer ranges being established (very true for hormone levels associated with thyroid issues), or the accepted norm is so low that it still includes levels that could still be causing symptoms. For instance, the accepted level of B12 in the U.S. is 200-1100 despite that symptoms of deficiency are prevalent in those with numbers below 400. (The accepted low in Japan is 500).

I've also been getting better at recognizing the feeling of having low blood sugar which happens when I can't eat the foods that are made available at work, social gatherings, or when I'm on the road. I suppose I have to get better at having a snack on hand or at least a beverage other than water.

The good news is that getting tested for vitamin deficiencies and hormone levels is easy, just blood tests, and shouldn't be all that expensive. 

That said, I wouldn't be the least bit surprised if I found out in the future that there was something else wrong with me. Who knows how much damage gluten did to my entire digestive system, how long it will take to heal if it can heal, and if I still have some other issue that just hasn't gotten bad enough to diagnose yet.

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Had my follow-up with my GI doctor last week.  My blood tests come back pretty much perfect- I test like a non-celiac.  So, hooray for that- I can be pretty dang confident that I'm doing the gluten-free thing correctly.

 

The downside of that is that the symptoms which have persisted probably can't be attributed to gluten any more. 

 

The stomach upset, I suspect is from artifical sweeteners (the fact that when I cut back on them, I feel less stomach upset, probably confirms this).  I think I may be having withdrawal from them, though I don't know if that's supposed to be possible (does that sound crazy?  I had a lot of them in my diet, and for a long, long damn time).

 

The bigger issue is that of the attacks of sudden-onset fatigue I keep getting.  They often act exactly like low blood sugar- both the symptoms, and sometimes the cure (sometimes, eating something will perk me right back up, especially something with easily-accessible sugar).  A couple years back (when I was starting the hunt for WTF is wrong with me, and hadn't figured celiac out yet), I did get checked for diabetes, thyroid, and anemia.  Fine (A1C average blood sugar was something like 94, though... hmm...), fine, and a little bit/borderline, but not a ton, respectively.  So I'm assuming that those probably aren't the causes, as I had the same tiredness issues then.

 

So, I'm a little happy, a little exasperated, a little worried.  My GI doctor pointed out that autoimmune disorders tend to run together, and the tiredness might be a symptom of another one.  She said to talk to my primary care about it, which I will at my next physical (which is in August- she books very far out, and this doesn't seem worth a sick visit, as it's a persistent annoyance rather than an emergency or something new).

 

Could also be things I already know, for all I know.  I have asthma but I try not to use my inhaler unless I really, really need it.  I have allergies and the pollen is ridiculously high where I live right now.  I do tend to run on kind of a sleep debt- but it's there even after I "catch up" for a couple of days.  I know I tend to put demands on myself physically and mentally and sometimes don't realize how much I ask of myself till I look back on it and wonder WTF I was thinking (this can happen even when I try to account for it, it's like Hofstadter's law, lol).  And (if this means anything) I know my blood pressure is consistently low- good-low, but, I have to say, I was shocked that when it was taken at my last exam, it wasn't at least a little high, because 1. I felt a little anxious and 2. I have sort of cringeworthily increased my sodium intake (partly knowing that I have such a low baseline blood pressure and am young enough that it woudln't kill me quick, and also knowing pathologically low BP is something my mother had a few years ago).

 

Anyway, ramble.  God, the tiredness is frustrating.  Makes me feel weak and pathetic.  :(

I really wish that I could help or offer solutions.  All I can do is sympathize, as I'm suffering a lot of energy issues and fatigue as well.  I hope you find some answers.

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I forgot. If your vitamin and hormone levels check out as being fine, you may want to look into Chronic Fatigue Syndrome. I can't say that I understand the science completely (and I doubt that the doctors do either) but I do know that mononucleosis and celiac have a connection to a molecule called intraleukin 15 that causes excess t-cells to be created.

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Thanks guys!  We'll see how this goes tomorrow.

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You are not alone dealing with fatigue long after diagnosis. Myself I am (almost) 10 months in and dealing with fatigue and exercise intolerance. I get so pissed with all these happy go lucky people that run marathons after a week off gluten and assume that´s how things work out for all of us.

 

But I´m not jumping to the "Chronic fatigue syndrome" diagnosis just yet. This diagnosis should only be given when there´s no medical explanation for your fatigue, in other words when theres no treatment and all hope is out. We have an explanation for your fatigue * celiac * so don´t  label yourself with a useless CFS diagnosis or trick yourself or your doctor to skipping all the testing and giving the lazy man´s diagnosis.

 

There´s a lot of tests you could take to rule out all the diseases of the world that cause fatigue. I for myself I´m waiting eagerly to see the follow-up biopsy. If the villi healed, then we seriously need to look for other explanations, and there´s a lot of tests that could be done.

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EKG came out fine.  We'll have to see how the tests from the blood draw end up turning out.

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Is it too late.  You certainly should have a total iron count done.  Low iron can result in extreme fatigue.  I hope you get this solved.

 

D

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Oh, I never updated on this- I had mild anemia (and protien deficiency), other mild deficiencies typical of celiac (I forget them all), and low Vit D.  Taking a Vit D supplement has helped tremendously, and I'm making an effort to get more iron in my diet.  Some issues with fatigue have recurred recently, but I sort of suspect at least some of that is that where I am it's cold and gets dark at 4:30pm now and that makes me want to hibernate.  (The tiredness popping up has almost directly correlated with the clocks being set back in November.)

 

My folate (iirc) was actually (non-dangerously) high because I'd been eating so much Chex, though, lol.  I have a friend (non-celiac) who had the same thing come up in bloodwork for the same reason.

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Oh, I am glad to hear you discovered this.  I left my anemia behind within the last 6 months.  I had 30+ years of symptoms and am now 18 months gluten free.  I am feeling so much incredibly better in the last 6 months.  I hope the same for you.  Get some natural, good quality supplements and don't forget to take them.  Are you on enzymes to?  If you are low in nutrients it may be because your villi are still healing.  The digestive enzymes can help break down your food, until the villi are healed up.  This is according to my functional medicine nurse.  It worked for me!

 

The fatigue and anemia seemed to be directly connected for me.  I took folatin  for my anemia along with iron.  The nurse explained to me that they found I had immature red blood cells.  These do not carry oxygen as well as regular red blood cells.  They also break down when they get in tight spots.  Anyway, every cell in my body feels better to me!

 

D

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    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • 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.
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