The Fatigue...!

[YankeeDB]

My suggestions:

1. Sleep as much as your body tells you to.

2. Take liquid and sublingual vitamins.

3. Consider trying a sublingual supplement called ATP (available from Bayho).

4. Exercise may make it worse or better; don't force it (like I did).

5. Other foods can cause fatigue too--getting tested for other sensitivities or doing an elimination diet may be helpful long term.

6. Simplify your life as much as you can.

7. Realize that few people will understand how tired you are and ignore/forgive their criticisms and ignorance.

8. Sometimes tests give false negatives. Even if yours are negative, you might try an elimination diet to detect which food(s) may be problematic.

9. If weight loss is a problem, try coconut oil. Coconut oil is good in general as it is easily absorbed and will help in absorption of fat-soluble vitamins.

Also, why can't you try gluten free before getting the test results? Do you anticipate further tests?

Good luck! I know how you feel!!!!

[nithya]

I take some stuff called arabinox, it increases the immune system. Before being gluten-free I was fatigue all the time, and had the strangest infections. After the diet it all went better, but not as good as now with the arabinox.

Check out the internet for, it may help you!

[jenvan]

lushgreen-

keep me updated. it your iron counts or low enough, the infusion would be a good idea for you. no constipation there...just a boring 4-6 hour wait in a doctors office. i took a mini-dvd player and watched alias, so that helped also, make sure you aren't buying generic or cheap iron--those are much more likely to constipate. Slow Fe brand, which is coated, may still cause some, but it was definitely not as bad as the cheaper iron, it was worth the extra $$ for me.

[lushgreen]

Hi All,

Thought I'd follow-up and tell you what I heard from my doctor - mild hypothyroidism (TSH is 6.25) and severe vitamin D deficiency (value was 8; normal is 30). No celiac according to her (she tested IgA and tTg, I think - I haven't seen the results). Am wondering whether to pursue gluten intolerance/sensitivity testing as I now have answers for my extreme fatigue and depression. Either condition can cause it and now I have two.

Chana, do you know much about vitamin d deficiency? Information on the internet is kind of scanty (compared to the other vitamins). I've started with a supplement of 800 IU. What do you think of daily sunlight exposure to correct the deficiency? Or the use of indoor full spectrum lighting? I know there is a lot of controversy around the benefits of UV exposure to correct vit

D deficiency?

Jenvan thanks for the tips on iron infusion. My doctor says I'm not anemic but I actually question that. I think I am going to be getting a new doctor. I did not at all like the way she handled telling me my diagnoses - rather careless and not very professional.

YankeeDB, those are some great ideas. I hear coconut oil is supposed to be good for vit D absorption. And how do you take vitamins sublingually? About the false negatives - I am wondering if that is the case with the celiac. I am not prepared to take on a diagnosis of IBS just yet. I have been waiting to go gluten free till I got the blood results thinking I may have to get a biopsy. Now it seems overwhelming to go gluten free (esp. in the light of negative results) as there are other changes I have to make to my diet for the hypothyroidism.

Nithya, arabinox does not seem to be availabe in the US - I did a search.

[jenvan]

lushgreen-

i think its probably a good idea for you to go to another doctor. i would get copies of your test results and take them with you. since i was diagnosed, i insist on getting copies of all my lab results and keep them in a file to monitor my own progress and to take to other doctors for medical history. if they give you a hard time or act like its a hassel--remember it is your legal right to have copies of them. if your doctor was flippant with you, they may not be taking the time they should to work with you...

[karen G]

Hello All,

I'm not gluten-free yet - still waiting on test results, but in the meantime, I was wondering if there were any ways you found to cope with the fatigue?  It is just so debilitating for me and has taken such a toll on my work performance.  I am so worried about what the consequences are going to be for my career.  I feel chronically exhausted, especially after I eat and find it hard to stay awake through the day.  I'm filled with lethargy and apathy.  In addition, I've got ADD and major brain fog.

I know a lot of you are dealing with these things, even after going gluten-free.  Have you found any ways to deal with this?  Caffeine isn't so good for me - I'm very sensitive to it.  I get jittery, have to pee a lot and it keeps me up at night. 

Help!

<{POST_SNAPBACK}>

[mytummyhurts]

Hi All,

Thought I'd follow-up and tell you what I heard from my doctor - mild hypothyroidism (TSH is 6.25) and severe vitamin D deficiency (value was 8; normal is 30).  No celiac according to her (she tested IgA and tTg, I think - I haven't seen the results).  Am wondering whether to pursue gluten intolerance/sensitivity testing as I now have answers for my extreme fatigue and depression.  Either condition can cause it and now I have two.

<{POST_SNAPBACK}>

Did you have any other Celiac symptoms? I'm sorry, I don't know if you posted anything else. Of course, there are many symptoms, but I believe the most common are nausea, vomiting, diarrhea, fun stuff like that. I was just curious if you had any of those too.

[lushgreen]

Hi Jen,

I am definitely seeing another doctor - as soon as this round of testing is over. The doctor left out testing for vitamin A so I go in for that today. It made me so mad that I had to point it out to her - she hadn't even noticed. And a vitamin A deficiency may not only explain my dry eyes but it could point to a fat malabsorption syndrome and something more critical It's crazy how much self-doctoring we have to do!

mytummyhurts, the other celiac disease-like symptoms I have are diarrhea, frequent bowel movements, bloating, gas, fatty stools.

If not celiac disease, then there is some other malabsorption thing going on, I think.

[chana]

Chana, do you know much about vitamin d deficiency?  Information on the internet is kind of scanty (compared to the other vitamins).  I've started with a supplement of 800 IU.  What do you think of daily sunlight exposure to correct the deficiency?  Or the use of indoor full spectrum lighting?  I know there is a lot of controversy around the benefits of UV exposure to correct vit

D deficiency?

Now it seems overwhelming to go gluten free (esp. in the light of negative results) as there are other changes I have to make to my diet for the hypothyroidism.

Hi! glad you finally have some answers. It took my doctors a few good YEARS to figure out the vitamin D problem, and it seems that lots of my medical problems are due to this, but since it took so many years to find it, lots of problems will never get back to normal anymore - I lost a lot of my vision from close, certain neurological problems will never go away...

But anyway, back to your question: vitamin D deficiency can cause lots of different medical problems such as osteoporosis, neurological problems, arthritis, infections in different parts of your body ( I have an infection in my hip for years and now after taking vitamin D for about 6 months I'm starting to feel a bit of a change, although I was told my hip will never be the same...).

My number was 2 and the dr. said she never met a patient with such low vitamin D values. I was taking 50,000 units of vitamin D first 3 times a week than slowly lowered it until the values were normal again. Now I'm down to 800 a day. There is hope, it takes a while till you start feeling a change, so don't lose hope!!!! Daily sunlight helps - it helped me a lot, I don't know anything about the indoor lighting-sorry. (Don't over do it - sun also isn't the best thing for your body!!)

Make sure you check the levels every now and then (I check it every 4-6 weeks) since it is dangerous if you take too much!! I hope I didn't scare you I'm just trying to help.

I have a thyroid problem for years now and never heard of a diet for the hypothyroidism, can you please explain?!??

Chana

[YankeeDB]

Here is a good link so you can research malabsorption.

Open Original Shared Link

Coconut oil will help with absorbing fat-soluble vits including vitamin D. You might also want to be scanned for osteoporosis if you are D deficient.

Don't let them just treat your symptoms--find out WHY (the voice of experience here!).

[Cindy Chabot]

I find the fatigue really difficult as well. I have been gluten-free since July 1 and I hope the fatigue starts to fade. I find I need a nap most afternoons, luckily I am on holidays. My iron level is low and I have been trying iron supplements. I understand the feeling and sympathesize with you.

[lushgreen]

chana, really, 50,000? i need to call my doctor and ask her about the 1000 IU she has recommended for me. it seems like too little to correct such a deficiency when there is a lot going on right now in the medical field to change the vit D RDA to 1000 anyway. it seems it should take a lot more to correct a severe deficiency. i read elsewhere too after your post that 50,000 is the preferred treatment. my doctor does not seem to be on top of things...

about diet and hypothyroidism - there are food that are considered goitrogenic, meaning that they facilitate the development of goiters. there is a whole list of foods to be avoided - if you have not, check out mary shomon's book and website - tons of good information on HT. soy is supposed to be the worst and it is strongly suggested to avoid soy products. i first heard about this on this site - there's an old thread on hashimoto's where people got into the soy good - soy bad issue Open Original Shared Link

the bad news for those of us who have the double whammy of ht and vit D deficiency is that soy consumption is also supposed to increase the body's need for vit D! so there's another reason for us to stay away...

how much daily sun exposure do you get? there seems to be so much being said about what amount is safe, not safe...so confusing. there are supposed to be indoor UV lights one can use that would be useful particularly in the winter - i'll see if i can find a link.

yankeedb - EXACTLY about not treating the symptoms, which my doctor seems very content to do (why are there so many incompetent doctors?). i have been the one suggesting possible links, further testing, wondering what the underlying cause may be and asking if we can look into it further, instead of just resting with being told the i have hypothyroidism and vitamin d deficiency...thanks for the link.

cindy - hope you've looked into other disorder/insufficiencies besides celiac that may be causing the fatigue. there just seem to be so many illnesses of which fatigue is a major symptom...

[Guest BERNESES]

Lushgreen (what a great name!)- I just found your post and wanted to say a few things. It's good that you found out what was going on "sort of" but don't stop here. My primary care doctor (who is wonderful- she believes that I have Celiac even though my biopsy was negative. My OB/GYN does too- interesting- female doctors seem more ready to accept and check for it than males in my experience) told me that there are two things that can cause malabsorption- Celiac's and a thyroid problem. Now, you know you have one but there's also a high correlation between thyroid and Celiac's.

Also- I'm a grad student too. I am working on a PhD in Education and let me tell you- I know EXACTlY what you're saying. I got married in October and already had symptoms but they got worse in December-January. i went and talked to my professors and my boss. I had three people to deal with (well, primary people anyway). My boss for my grad assistantship and two professors with whom I was taking courses. I ALMOST took a leave of absence because I was so sick but here's what ended up happening. I got in a HUGE fight with my boss (I was supervising 7 student teachers for her) and I just took matters into my own hands and worked things out between me and my student teachers. My female stats professor was so understanding. She told me that I could take extensions and that she'd work with me to get me through the semester. My male professor was NOT NICE even after telling me that he had a friend with Celiac's who cracked some ribs and had to go to the ER after vomiting from ingesting gluten. He could have cared less.

So, with him, I did his work first. I just adjusted my expectations for myself and thought (for the first time in my life) I just have to pass. With my female stats professor, I took extensions ONLY when I really needed them (I didn't want to take advantage of her good nature) but i did take some. I ended up finishing the semester (and doing fine). I don't know what your graduate work is in and i'm sure it varies department to department, but i also found many professors to be VERY supportive. And I haven't been easy. My mom died 4 months after being diagnosed with Stage 4 stomach cancer my first year in the program and then this. But there are some people who won't get it and others who will. talk to the people who do get it and just make your own accomodations if you have to.

Another option is going to the department head or Dean to discuss the situation. In my case, I couldn't go to the department head about my boss (who was SO intolerant) because he was her husband. But, i worked it out and you will too. PLEASE email me anytime. hang in there, Beverly

[emeraldskies]

Armetta, could you tell me the name of your doctor? I still haven't found one who will treat me, and your doctor sounds like he would run the tests that I need.

[lushgreen]

Hi Beverly,

I just noticed this post to me from way back when, which I had not seen before as I was off the board for a few months thinking (thanks to many misguided doctors) that I needed to get celiac out of my head. Thanks so so much for the words of support and suggestions on how to handle grad student responsibilties along with trying to doctor oneself.

I'm at the dissertation stage so fortunately don't have many day to day responsibilities as one does if taking classes. I've tried talking to professors (have had to, I was moving at such a slow rate), but it's been a really mixed bag. It's been difficult to explain what is going on as I feel my most significant symptoms have to do with brain fog and cognitive processing! What has made this a whole lot easier for me in the past few months is knowing that it is not in fact all in my head but has very much to do with what is going on in my GI system - malabsorption - and not enough nutrients getting to my brain! Just knowing this has made a huge difference for me - I beat myself up and the guilt rides aren't quite as intense.

Well, I'm now in the process of getting myself diagnosed again, Open Original Shared Link so hopefully that will be another shot in the arm (if I come out positive) in terms of feeling comfortable asserting that I am unwell and therefore need just a little latitude.

Thanks again Beverly for the words of encouragement. Hope your work is coming along!