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Sooo Tired, Hair Loss, No Stamina


ravenwoodglass

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ravenwoodglass Mentor

Okay great minds here maybe you can help. I know I should see a doctor but I have no insurance. I am going to see if I can get a sliding fee scale at a clinic next week if I have the time or energy but it will have to be a real big sliding scale for me to afford it.

I know I am not getting glutened or soyed as I don't have any symptoms of that but I am so very tired all the time. I get enough sleep, a regular 8 hours a night. I know my diet isn't great. I only eat once a day late in the afternoon and a snack before bed but I am not losing weight so I think I am getting enough calories. There is no way I can eat and then leave my house so I don't eat until I am home for the day. I know that isn't ideal but that is the way I have been for 20 or so years now.

My hair is thinning quite a bit. I also have what almost looks like bruising on my neck and the same thing on my cheeks and over my eyebrows. I have tried to research the discoloration but haven't found anything like it on line. My nails have prominent vertical ridges and spots that almost look like wax drippings.

I also am running a subnormal temp at about 97 but I don't feel cold.

By midafternoon I am ready to drop. I only do a volunteer job 3 days a week and I get home at either 1 or 3 or so and I hardly have the energy to even cook anything let alone eat. I haven't had an appetite in years, a side effect of being undiagnosed for so long, like Pavlov's dog in reverse.

My vision gets blurry a lot but it is not all the time so I don't think I need new glasses. My muscles hurt but it is not anything I can't stand.

I tried some stress vitamins but those bound me up for 4 days so they may have had soy even though they said they were gluten and soy free. If anyone knows of a for sure soy and gluten free vitamin with high levels of B and C let me know.

When I get to the doctors it would be good to know what tests I should ask to have done other than the ususal CBC. I do not trust doctors at all and want to have as much info about what tests I might need before I go.

Does anyone have any ideas as to what I should request?


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bartfull Rising Star

It sounds to me like a B-12 and/or biotin deficiency. I have the same ridges and waxy looking white spots on my fingernails. I have the hair falling out and the extreme fatigue too. My doctor wants to test for those vitamins, plus vitamin D. He is also ordering a complete metabolic panel to see what else might be going on.

I told him I started taking vitamins last week, but he agreed that I might not be absorbing the B-12 and biotin. He would like to see me go back on sublinguals for those two if I can only find one with no gluten/corn/coloring/flavoring.

saintmaybe Collaborator

Okay great minds here maybe you can help. I know I should see a doctor but I have no insurance. I am going to see if I can get a sliding fee scale at a clinic next week if I have the time or energy but it will have to be a real big sliding scale for me to afford it.

I know I am not getting glutened or soyed as I don't have any symptoms of that but I am so very tired all the time. I get enough sleep, a regular 8 hours a night. I know my diet isn't great. I only eat once a day late in the afternoon and a snack before bed but I am not losing weight so I think I am getting enough calories. There is no way I can eat and then leave my house so I don't eat until I am home for the day. I know that isn't ideal but that is the way I have been for 20 or so years now.

My hair is thinning quite a bit. I also have what almost looks like bruising on my neck and the same thing on my cheeks and over my eyebrows. I have tried to research the discoloration but haven't found anything like it on line. My nails have prominent vertical ridges and spots that almost look like wax drippings.

I also am running a subnormal temp at about 97 but I don't feel cold.

By midafternoon I am ready to drop. I only do a volunteer job 3 days a week and I get home at either 1 or 3 or so and I hardly have the energy to even cook anything let alone eat. I haven't had an appetite in years, a side effect of being undiagnosed for so long, like Pavlov's dog in reverse.

My vision gets blurry a lot but it is not all the time so I don't think I need new glasses. My muscles hurt but it is not anything I can't stand.

I tried some stress vitamins but those bound me up for 4 days so they may have had soy even though they said they were gluten and soy free. If anyone knows of a for sure soy and gluten free vitamin with high levels of B and C let me know.

When I get to the doctors it would be good to know what tests I should ask to have done other than the ususal CBC. I do not trust doctors at all and want to have as much info about what tests I might need before I go.

Does anyone have any ideas as to what I should request?

GNC vitamins are great, they have none of the major allergens including gluten, dairy, and soy. I swear by them, but they run in the pricey range. They have different types of formulations, depending on what your problem is. They have hair loss vitamin supplements for sure, a regular woman's 'one a day,' and a bone loss supplement for sure among many others.

I'm on the bone loss formulation, and supplement with extra high potency iron with C, as well as D. I've specifically tested low in those two and tend towards gingivitis and apthous ulcers, hence the extra C supplementation along with needing to make the iron more bioavailable. If I'm feeling very, very tired,I also supplement with extra B. There's an energy drink that GNC sells that was originally formulated for chemo patients, with high levels of B and quercetins. It's amazing, and I'll drink one or two with lunch toget me through the rest of the day. It's called FRS.

The fatigue, for me, has been really slow to resolve. But it IS getting there. I'm down from needing 11 or 12 hours of sleep to a solid 9 or 10. I can't miss a night, otherwise I spend the rest of the week trying to catch up and feeling like crap, even without getting glutened.

As for hair loss, I really had to work to find shampoos and conditioners that I wasn't allergic to. My scalp was getting inflamed from the sulfates and phthalates in cheap commercially available shampoos, irritating my hair follicles and causing my hair to fall out by the root. I finally settled on John Frieda's Root Awakenings shampoo, and Renpure Organics conditioner.

I also use Argan oil as a detangler and leave in conditioner, and have bought Hamadi Shea Leave-In conditioner and spray, which come highly recommended in gluten free circles elsewhere. Everything but the Hamadi is available at CVS.

Since switching, it was like an overnight change. I hardly lose any hair, hardly have any hair breakage. My scalp hardly itches at all. My hair is so soft, and pretty. I've never had hair like this in my life! I can't wait to see what it looks like when it grows out.

I hope you feel better soon!

IrishHeart Veteran

Raven, my friend,

I am sorry to hear you are flagging and I wonder what happened ---as you always seem to be doing so well.

My first thought was "what have you changed in your diet?" but

you answered that. I do not think you are getting enough nutrition--eating only once a day. IMHO

You could have several vitamin B deficiencies.

FOLATE (B9)-- for starters-- will cause that horrible fatigue, hair loss and lack of appetite.

Nail ridges are also a symptom of an iron deficiency.

May be a Vit C of D def too. (but I know you are good about supplementing)

(BTW, my "normal temp" is 96.5, :blink: so I am not sure if that means much. Some speculate people with thyroid issues have low temps)

I would request a CBC, CMP (metabolic profile) and a TSH (with free T4 and T3 if they will do it) and B-12 and Folate. Those are the most impacted from celiac.

As we are both serio-negative, I imagine it would be useless to do that test at this point, but your symptoms seem so much like mine BEFORE DX that I am wondering why on earth you have them NOW--since you have adhered to the gluten-free diet for so long.

NOW brand vitamins are gluten-free, Soy -free --and mostly everything else free--- at reasonable prices.

Good luck, honey and I hope you feel better soon!

Please let us know how you make out. You are always so good to all of us on here and I am hoping you rebound quickly.

My best, IH

cahill Collaborator
it would be good to know what tests I should ask to have done other than the ususal CBC. I do not trust doctors at all and want to have as much info about what tests I might need before I go.

Does anyone have any ideas as to what I should request?

If you have not had , or have not had recently, I would ask for:

an ANA

a FULL thyroid panel= TG AB and TPO AB (these are for Thyroid autoantibodies ) ,T3,T4,free T3 and a TSH

Vitamin D

Vitamin B

a CBC and CMP

I know these test can be expensive but with your symptoms I would ask for them.

Have you ever had trouble with your blood sugar? That may be something to check also.

(( HUGS)) I hope you feel better soon :)

cahill Collaborator

Raven, my friend,

I am sorry to hear you are flagging and I wonder what happened ---as you always seem to be doing so well.

My first thought was "what have you changed in your diet?" but

you answered that. I do not think you are getting enough nutrition--eating only once a day. IMHO

You could have several vitamin B deficiencies.

FOLATE (B9)-- for starters-- will cause that horrible fatigue, hair loss and lack of appetite.

Nail ridges are also a symptom of an iron deficiency.

May be a Vit C of D def too. (but I know you are good about supplementing)

(BTW, my "normal temp" is 96.5, :blink: so I am not sure if that means much. Some speculate people with thyroid issues have low temps)

I would request a CBC, CMP (metabolic profile) and a TSH (with free T4 and T3 if they will do it) and B-12 and Folate. Those are the most impacted from celiac.

As we are both serio-negative, I imagine it would be useless to do that test at this point, but your symptoms seem so much like mine BEFORE DX that I am wondering why on earth you have them NOW--since you have adhered to the gluten-free diet for so long.

NOW brand vitamins are gluten-free, Soy -free --and mostly everything else free--- at reasonable prices.

Good luck, honey and I hope you feel better soon!

Please let us know how you make out. You are always so good to all of us on here and I am hoping you rebound quickly.

My best, IH

Great minds DO think alike :D

MurderToWheat Newbie

I'm sorry you're going through this. The only thing that comes to mind is B vitamin deficiency, specifically B12, as others have brought up


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IrishHeart Veteran

Great minds DO think alike :D

We did another one of those cool simultaneous posts!! :)

Hi Chill!

cahill Collaborator

We did another one of those cool simultaneous posts!! :)

Hi Chill!

Hi IH :D

revenant Enthusiast

Hmm I have chornic fatigue from candida overgrowth. Blood sugar swings could cause blurry vision. I wonder if sugar problem may be a part of it? Sugar has a strong relationship to energy production. And like many have recommended, to get your vitamin and mineral levels checked (and if you do it at a normal blood lab, ask to see the papers). It seems like a lot of symptoms, I advise that you go see a good naturopath!

Marilyn R Community Regular

Dear Ravenwood,

I think Solar brand vitamins are pure. I get the "Vitamins Only" at a local health food store. They've been in business since 1947. I take two other supplements: Citracal (I wrote to the mfg,, it's supposed to be safe but could have trace soy ingredients. Lasty, I take D vitamin drops by Carlson. I think I overdosed myself on vitamin D3 last month once and felt like crap, it couldn't be related to a food issue.

I so hope you find our what's bugging you.

PS, I've missed your posts. I learned more from you than anyone!

Sending you cyber hugs (((())))) and best wishes!

You've had great advice so far. I think "D" is a separate blood tesst from CBC, maybe ask them to check your Vitamin D? Wish you well, sending you very best wishes.

Lisa Mentor

Raven, face "shadowing" (not sure if that's what it's called) can be a sign of hormonal imbalance....or it was with me. It gradually faded away.

Hope you get some answers. :)

rosetapper23 Explorer

Hmmmm....your symptoms do possibly indicate nutritional deficiencies. Vitamin D deficiency can cause blurred vision (actually seems like myopia), magnesium deficiency can cause hypothermia and muscle pain, iodine deficiency can cause low basal body temperature, Vitamin A deficiency can cause hairloss and hyperkeratosis (darkening of the skin), and zinc deficiency can cause blurred vision and hairloss. I also agree that you might need a really good B vitamin complex. A number of us here on the Forum take a co-enzyme B complex vitamin--I take more than the directions say because I seem to have difficulty absorbing B vitamins.

Personally, when my vision was blurred and my hair was falling out, it turned out to be a zinc deficiency. However, your case might be different.

AVR1962 Collaborator

Only one meal a day will cause your metabolism to drop off, body will go into preserve mode. If you having troubles with hair loss, vision and nails it is very possible your body is not getting the proper amount of nutrients. If you can, try to eat a little something every 3-4 hours even if it is a piece of fruit to keep that metabolism up. Make sure your daily calories intake is no lees that 1200.

Here is a chart that will help link some of your issues to vitamins that can help. Open Original Shared Link

The one thing I did that worked for me, not listed on the chart, was taking cod liver oil for my vision problems. Zinc and Biosil drops (biotin) for my hair loss.

ravenwoodglass Mentor

Thank you everyone for your replies. I have copied down the tests and appretiated your listing them.

I had melasma (sp) when I was pregnant and that was a darkening of my skin on my face. I think they call it the 'mask of pregnancy' and the skin thing is not like that. It is more a reddening like a sunburn or bruising. I also have a circular spot or two on my wrists that have been there forever.

The only vitamins I take at present are D3 with K, which seemed to help the bruisy a rash a bit but not a lot. I will go back to taking my B12 subs which I stopped a couple of years ago when my levels came back very high.

My local health food store carries NOW brand but I couldn't find the stress level Bs and Cs so I will go tommorrow and ask the folks there if they make one or what combo to take. They do also carry the Solgar but I haven't tried those. They are good about calling companies for me so I will have them double check the soy and gluten statis of those if it isn't on the label.

I have wondered at times about Lupus and I think the ANA is the test for that so thank you to the folks that mentioned that as I couldn't think of what that was. Can you get false negatives on that? If so would biopsies of the redder skin show anything up?

I will also check on the blood sugar but if I have to eat multiple times I day I don't know how I would be able to leave the house without increasing my anxiety meds, which I don't really want to do. I eat probably about 750 to 900 calories a day now and am not losing weight but my volunteer work is pretty active so if I were to eat like most folks do I would likely have to get new clothes every month or so. LOL

Hopefully the doctor at the clinic here will at least do some testing. I was pegged as a malingerer or a drug seeker during all my years of misdiagnosis and don't trust doctors as far as I could throw them but maybe since I haven't been to any in so long they might listen to me now.

Thanks again for all the replies. At least I can go in with a written list since my doctor phobia wipes my brain when I get in front of them.

dilettantesteph Collaborator

I believe that I get different symptoms from low level cc than higher level cc, so that is something to consider.

It is now winter so there is vitamin D deficiency to consider. I'm not sure if someone else mentioned it or not.

I also don't eat when I'm out. Neither does my son by his own choice. I've gone from 7 a.m. till 6 p.m. without eating and was just fine. I work on my feet and drove home. It's funny because before diagnosis I had terrible blood sugar problems and never could have done it. Now it really isn't a big deal.

Kansas Rookie

Hey...you are my "go to gal" when I need advice, so I hate you not feeling well! I would guess vitamin deficiency and the fact that your body needs food more often than when you are eating. Your body is going way too long between bedtime snack and dinner the next day. Is there anyway you could drink Ensure or make a nutritional something for breakfast? Maybe nibble at something through the day that wouldn't upset your system? I am gluten, soy and dairy free and I take Nature Made Vitamins, be sure and read label as some do contain soy. I also have learned that I can only stay healhty if I do unprocessed foods, so many on here say they can drink pop, eat chips, candy, condiments,etc., I react to all of them. I know you know all of that, so it is a puzzle! Please know you are in my thoughts and prayers.

IrishHeart Veteran

I have wondered at times about Lupus and I think the ANA is the test for that so thank you to the folks that mentioned that as I couldn't think of what that was. Can you get false negatives on that? If so would biopsies of the redder skin show anything up?

Raven,

The Lupus Foundation states:

"If the ANA test comes back negative it is considered a normal result, and it is very good evidence against lupus as an explanation for the symptoms.

What does a positive ANA mean? Unlike a pregnancy test, which if positive generally means only one thing, a positive ANA can mean many things. There are many illnesses and conditions associated with a positive ANA, including rheumatoid arthritis, Sjogren's syndrome, scleroderma, and lupus, as well as infectious diseases such as mononucleosis, subacute bacterial endocarditis, and autoimmune thyroid and liver disease.

Certain medications can cause a positive ANA, and many healthy people with no associated illness or condition have a positive ANA. In fact, about 5% of the general population will have a positive ANA. "

I do not think there are false negatives on that one and I do not believe they biopsy skin for that condition. Maybe someone else knows more.

Hon, I gave your symptoms some more thought because I am worried about you and IMHO, I honestly think you need more nutrition and protein throughout the day and a vitamin boost. But certainly, you need to be checked out. I share your "enthusiasm" for doctors :rolleyes: --as you well know--but unfortunately, we need them to run tests.

Another test to ask for is SED RATE. It shows inflammation in the body, just as the ANA test does.

Thyroiditis is my first thought, however. Hair loss and fatigue are often signs.

Let us know. You are in my thoughts! IH

ravenwoodglass Mentor

Raven,

The Lupus Foundation states:

"If the ANA test comes back negative it is considered a normal result, and it is very good evidence against lupus as an explanation for the symptoms.

What does a positive ANA mean? Unlike a pregnancy test, which if positive generally means only one thing, a positive ANA can mean many things. There are many illnesses and conditions associated with a positive ANA, including rheumatoid arthritis, Sjogren's syndrome, scleroderma, and lupus, as well as infectious diseases such as mononucleosis, subacute bacterial endocarditis, and autoimmune thyroid and liver disease.

Certain medications can cause a positive ANA, and many healthy people with no associated illness or condition have a positive ANA. In fact, about 5% of the general population will have a positive ANA. "

I do not think there are false negatives on that one and I do not believe they biopsy skin for that condition. Maybe someone else knows more.

Hon, I gave your symptoms some more thought because I am worried about you and IMHO, I honestly think you need more nutrition and protein throughout the day and a vitamin boost. But certainly, you need to be checked out. I share your "enthusiasm" for doctors :rolleyes: --as you well know--but unfortunately, we need them to run tests.

Another test to ask for is SED RATE. It shows inflammation in the body, just as the ANA test does.

Thyroiditis is my first thought, however. Hair loss and fatigue are often signs.

Let us know. You are in my thoughts! IH

Thanks for the info. I do have to agree that you and the others are most likely right about the nutrition issue. I am going to make a trip to the health food store tommorrow and get some other supplements. I suppose I should also start following my own advice and do more cooking on the days that I do have the time so that I don't end up just making a pnut butter sandwich and then falling into my chair and forgetting to eat anything else. :ph34r:

Thanks again everyone for the testing info. I will be contacting the clinic tommorrow and see what I can do about testing. If I can't get it in my city I should be able to get the hospital I was going to before to okay me for the sliding fee scale for at least the testing although I don't think they have a general clinic.

Bubba's Mom Enthusiast

Raven..I just wanted to say I hope they can figure out what's going on with you. We dearly love you and my heart breaks at the thought you aren't feeling well.

It does seem to me that you aren't taking in enough calories, and as a result it's very likely you are low in some nutrients? You need to take in "fuel" or you'll be running on empty and feel tired. Eating most of your food in one or two doses can wreak havok on your blood sugar too.

I totally understand the going without eating. I have been guilty of it myself, but we need to eat more frequently.

(((best wishes and lots of hugs)))

AVR1962 Collaborator

Thank you everyone for your replies. I have copied down the tests and appretiated your listing them.

I had melasma (sp) when I was pregnant and that was a darkening of my skin on my face. I think they call it the 'mask of pregnancy' and the skin thing is not like that. It is more a reddening like a sunburn or bruising. I also have a circular spot or two on my wrists that have been there forever.

The only vitamins I take at present are D3 with K, which seemed to help the bruisy a rash a bit but not a lot. I will go back to taking my B12 subs which I stopped a couple of years ago when my levels came back very high.

My local health food store carries NOW brand but I couldn't find the stress level Bs and Cs so I will go tommorrow and ask the folks there if they make one or what combo to take. They do also carry the Solgar but I haven't tried those. They are good about calling companies for me so I will have them double check the soy and gluten statis of those if it isn't on the label.

I have wondered at times about Lupus and I think the ANA is the test for that so thank you to the folks that mentioned that as I couldn't think of what that was. Can you get false negatives on that? If so would biopsies of the redder skin show anything up?

I will also check on the blood sugar but if I have to eat multiple times I day I don't know how I would be able to leave the house without increasing my anxiety meds, which I don't really want to do. I eat probably about 750 to 900 calories a day now and am not losing weight but my volunteer work is pretty active so if I were to eat like most folks do I would likely have to get new clothes every month or so. LOL

Hopefully the doctor at the clinic here will at least do some testing. I was pegged as a malingerer or a drug seeker during all my years of misdiagnosis and don't trust doctors as far as I could throw them but maybe since I haven't been to any in so long they might listen to me now.

Thanks again for all the replies. At least I can go in with a written list since my doctor phobia wipes my brain when I get in front of them.

Have you had your thyroid tested?

Gemini Experienced

Okay great minds here maybe you can help. I know I should see a doctor but I have no insurance. I am going to see if I can get a sliding fee scale at a clinic next week if I have the time or energy but it will have to be a real big sliding scale for me to afford it.

I know I am not getting glutened or soyed as I don't have any symptoms of that but I am so very tired all the time. I get enough sleep, a regular 8 hours a night. I know my diet isn't great. I only eat once a day late in the afternoon and a snack before bed but I am not losing weight so I think I am getting enough calories. There is no way I can eat and then leave my house so I don't eat until I am home for the day. I know that isn't ideal but that is the way I have been for 20 or so years now.

My hair is thinning quite a bit. I also have what almost looks like bruising on my neck and the same thing on my cheeks and over my eyebrows. I have tried to research the discoloration but haven't found anything like it on line. My nails have prominent vertical ridges and spots that almost look like wax drippings.

I also am running a subnormal temp at about 97 but I don't feel cold.

By midafternoon I am ready to drop. I only do a volunteer job 3 days a week and I get home at either 1 or 3 or so and I hardly have the energy to even cook anything let alone eat. I haven't had an appetite in years, a side effect of being undiagnosed for so long, like Pavlov's dog in reverse.

My vision gets blurry a lot but it is not all the time so I don't think I need new glasses. My muscles hurt but it is not anything I can't stand.

I tried some stress vitamins but those bound me up for 4 days so they may have had soy even though they said they were gluten and soy free. If anyone knows of a for sure soy and gluten free vitamin with high levels of B and C let me know.

When I get to the doctors it would be good to know what tests I should ask to have done other than the ususal CBC. I do not trust doctors at all and want to have as much info about what tests I might need before I go.

Does anyone have any ideas as to what I should request?

Every single one of your symptoms screams of very low thyroid....had all of them at one time or another myself. I doubt it's a vitamin deficiency. Have a full thyroid panel done because you need thyroid hormone! You also need health insurance because you have many symptoms that cannot be ignored. :(

If you go to the ER, you cannot be turned away.

ravenwoodglass Mentor

Every single one of your symptoms screams of very low thyroid....had all of them at one time or another myself. I doubt it's a vitamin deficiency. Have a full thyroid panel done because you need thyroid hormone! You also need health insurance because you have many symptoms that cannot be ignored. :(

If you go to the ER, you cannot be turned away.

Yea thyroid seems to be the general idea from folks. Can you have false negatives on the thyroid testing? I had some thyroid testing a couple years ago that came back fine but things do change. Could my long term, 9years, of iodine avoidance have caused thyroid damage? If so would my adding more iodized salt back in help? I did start using iodized salt a couple weeks ago but likely could and should have done so a couple years after diagnosis.

Insurance is out of the question right now. I have a little too much money coming in for Medicaid but after my divorce I discovered paying out of pocket for it would take 3/4 of the money I have a month to live off of. I know I am not alone in that issue. There are lots of us that fall through the cracks insurance wise. Fortunately there is a hospital about 30 miles away that has a generous sliding fee scale if the one in my city doesn't. I will be contacting them this week.

Thanks again everyone for all the helpful advice.

UKGail Rookie

Raven - like many other answers, I also thought thyroid issues and insufficient nutrition were most likely to be the root cause of your problems.

If your main meal is often just a quick fix meal based on gluten-free bread or similar, then not only is it likely to be insufficient in healthy nutrients, but it might also be aggravating your delicate celiac digestive system.

So, in addition to looking at thyroid, vitamin deficiency, ESR and maybe an ANA test, perhaps you need to treat yourself like a newbie for a while and go back to diet basics, eating just a small number of plainly prepared, well cooked simple meat and veggies?

After I get glutened, I really struggle to eat for at least a week, and I find home made meat and vegetable soups work best for me, ideally using home made meat stock. I also struggle with fatigue, and this regime improves rather than worsens it for me, although you need more calories than soup meals can provide in the long run. You might find that your body makes more effective use of the concentrated nutrition in the soups than it can in a normal cooked meal, and is much better for you than a gluten-free sandwich. Soups also travel well in a thermos flask, so although the causes of your inability to eat during the day might be different to mine, perhaps you might find just a couple of mouthfuls of tasty soup is ok for breakfast and during work breaks, without upsetting you too much?

One final thought, we are all told that eating before going to bed is a no-no. I think that is because the digestive system supposedly slows down a lot while we sleep, so it is therefore even worse for us poor celiacs with our easily upset stomachs etc. Although you clearly need the nutrition from your late night snack if you are only eating one other meal, I would try everything you can to try to rebalance your food intake to earlier in the day. I understand that old habits are hard to break though! Before I twigged to celiac, I was eating 3 meals a day, plus a late night snack because of gluteny food cravings. And my weight was ballooning. Now rapidly coming off, no cravings for nasties and no late night visits to the kitchen either.

I do hope you find the cause(s) of your fatigue and get better soon.

PS lupus and similar are almost as hard to diagnose as celiac, and the ANA test is not very specific. I wouldn't be in a big hurry to spend any money on a specialist unless the thyroid and basic blood tests are all negative and you don't respond to diet/supplementation changes. The ESR and maybe also the related CRP blood test is better at indicating an underlying health issue which needs closer examination. The ESR in particular is a very simple test, and shouldn't be expensive.

GFinDC Veteran

Hi Raven,

Sorry you aren't feeling well. I have to disagree with the idea that eating once a day is bad for blood sugar. My thinking is simple. If blood sugar spikes are bad for the body, why not limit the number of them? One blood sugar spike is not as damaging as 3 or 4 in a day, IMHO. Anyway, that is just my own idea, not anything backed by research. I only eat in the morning, and nothing after noon. I do think it is important to eat quality food though, meats and veggies and that kind of stuff.

My doctor said my thyroid tests were normal. But I felt like crap so I got some Natural Sources Raw thyroid to take. It made a big difference for me. I also had gone off salt for 5 years and was low on iodine. One day I decided to trial salt again by eating some on an apple. I felt the difference in about 30 minutes. More energy etc. So I am sure I was low on iodine at that point. I get the Natural Sources Raw Thyroid at either Vitacost or Vitamin Shoppe. They have it at some other health food stores around here too.

I have the ridges on my fingernails also, which have never gone away. I am not sure what they mean.

One thing I have been reading about recently is androgenesis. That is the male version of menopause. They say that in men the level of testosterone decreases about 1% a year starting at 40 years old. Testosterone decreases in women also but I don't know how much. They also say that drinking alcohol impairs the ability of the liver to process estrogen. So men can end up with high estrogen levels and low testosterone from getting old and drinking. Bad combo there for men. Not too bad for women though.

The article I read about it said that DHEA is a pre-curser to testosterone and can help women who are low on it. Both sexes need estrogen and testosterone, but in a different balance. DHEA doesn't help men for some reason.

Another thing they mentioned is MACA. MACA is a South American tuber that is supposed to stimulate endocrine glands to produce more hormones. Not expensive and maybe worth a try. I plan to try it soon.

Anyhow, just a few things you could try without a doctors' visit.

Long article on alcohol and male hormone effects, scary stuff if you are a man. Just posting since some of it applies to women also.

Open Original Shared Link

Wiki on Maca. There is ton's of stuff on Maca on the web. But the main thing to know is the use in SA is as a vegetable, so they are eating much more of it than a little pill. Personally i don't give a rat about sex, but feeling better would be nice. I figure if this stuff does increase endocrine gland output that might be helpful. I don't expect there is much proof or research on it though.

Open Original Shared Link

Feel better soon. :D

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    • TheDHhurts
      I've been buying my seeds and nuts from Prana Organics for a number of years because the products have been GFCO-certified. I just got a new order delivered of their flax and sunflower seeds, and it turns out that they are no longer GFCO-certified. Instead, it just has a generic "Gluten Free" symbol on the package. I reached out to them to ask what protocols/standards/testing they have in place. The person that wrote back said that they are now certifying their gluten free status in-house, but that she couldn't answer my questions related to standards because the person with that info was on vacation. Not very impressed, especially since it still says on their website that they are GFCO-certified. Buyer beware!
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      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      very interesting thanks for the info  
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