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tired28

Can Anyone Help?

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This may be long.

I'm 28 though my problems started when I was just 14. I suddenly developed constipation alternating with diahorrea and awful heartburn. Drs tried various things and did an endoscope and told me it was just relux. The anti acid treatment didn't really help so I gave up and nowdays just always eat little and often and sleep half sat up.

I got vertical ridges on my nails around this time which have never gone. I need so much sleep it is unreal. I can go to bed at 10pm and would easily sleep for 14-16 hours if I could. I have two children and work 3 days so not a possibility so I get about 8/9 hours at most and am permanently exhausted. I yawn all day and feel light headed for first hour of the day.

I get painful achy joints that flare up at times in random order but wrists and ankles very bad in morning. If I walk lots one day the next day I'm wiped out.

My eyes are really sensitive to the sun and this has got worse. I have to wear sunglasses to drive or my eyes hurt and pour with tears. My skin gets random blotches like hives which happen more the tireder I feel.

I have an overactive bladder so need to wee a lot more than most people and find travelling on buses etc a nightmare as if I need to wee I really have to go.

Weightwise I was 9 stone in my early teens then dropped 2 stone with all the heartburn and stayed that way for years. I put on weight since having the kids and am now about 9 stone again, I'm 5 foot 4.

I get sinus infections a few times a year, ENT refuse to give me any more nose drops so I get a lot of headaches from sinus pain/pressure. If I get a cold it seems to always end up a sinus infection. I get visual migraines thankfully not often though they are the full blown zig zag rainbow etc. I get flashing lights in my sight and slightly fizzy vision when I feel tired and wiped out.

Drs recently tested my blood for a variety of things and then said in a roundabout way I must be depressed as bloods came back negative. The only thing I find depressing is not knowing why I have so many random health issues. I have a loving partner of over 10 years who has seen me have these things to deal with day in day out. They flare up worse and times and seems quite random. I also have swollen lymph nodes including huge one one side of my neck.

So, any ideas? I'm here as gluten seems to be mentionned with a lot of my symptoms though would have no idea really. Was considering trying that biocard though it is expensive - would it be worth ruling out?

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You do sound like your in the right place. Before you spend your money on the biocard call your doctor and make sure they have tested you for celiac. If they haven't then ask them to give you the complete celiac panel.

You can try the diet to see if it helps but do wait to try until after all your testing is done or you will have a false negative. Sometimes there can be false negatives even when on a full gluten diet so do give the diet a try after testing no matter what the test results.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

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

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This may be long.

I'm 28 though my problems started when I was just 14. I suddenly developed constipation alternating with diahorrea and awful heartburn. Drs tried various things and did an endoscope and told me it was just relux. The anti acid treatment didn't really help so I gave up and nowdays just always eat little and often and sleep half sat up.

I got vertical ridges on my nails around this time which have never gone. I need so much sleep it is unreal. I can go to bed at 10pm and would easily sleep for 14-16 hours if I could. I have two children and work 3 days so not a possibility so I get about 8/9 hours at most and am permanently exhausted. I yawn all day and feel light headed for first hour of the day.

I get painful achy joints that flare up at times in random order but wrists and ankles very bad in morning. If I walk lots one day the next day I'm wiped out.

My eyes are really sensitive to the sun and this has got worse. I have to wear sunglasses to drive or my eyes hurt and pour with tears. My skin gets random blotches like hives which happen more the tireder I feel.

I have an overactive bladder so need to wee a lot more than most people and find travelling on buses etc a nightmare as if I need to wee I really have to go.

Weightwise I was 9 stone in my early teens then dropped 2 stone with all the heartburn and stayed that way for years. I put on weight since having the kids and am now about 9 stone again, I'm 5 foot 4.

I get sinus infections a few times a year, ENT refuse to give me any more nose drops so I get a lot of headaches from sinus pain/pressure. If I get a cold it seems to always end up a sinus infection. I get visual migraines thankfully not often though they are the full blown zig zag rainbow etc. I get flashing lights in my sight and slightly fizzy vision when I feel tired and wiped out.

Drs recently tested my blood for a variety of things and then said in a roundabout way I must be depressed as bloods came back negative. The only thing I find depressing is not knowing why I have so many random health issues. I have a loving partner of over 10 years who has seen me have these things to deal with day in day out. They flare up worse and times and seems quite random. I also have swollen lymph nodes including huge one one side of my neck.

So, any ideas? I'm here as gluten seems to be mentionned with a lot of my symptoms though would have no idea really. Was considering trying that biocard though it is expensive - would it be worth ruling out?

We have a lot in common. I too started having some of my worse symptoms at 14. My eyes used to be so sensitive to the sun that I couldn't even sit in a sunny room without them tearing up and closing. I also used to have to pee all the time - I was the most annoying person to do things with because I had to constantly look for a bathroom (Rheumatologist said this often is correlated with auto-immune disorders, btw). I have a life-long list of random health issues, including chronic infections, and getting sick often and for long duration. I had bronchitis chronically as a child and until I gave up gluten.

Getting through college was difficult. I could never get enough sleep, but not from a lack of trying. I just literally could never feel rested.

I also have swollen lymph nodes, all in my neck. I've had them checked many times and doctor says they are shotty lymph nodes from having a terrible cause of mono as a teen :blink:

Anyways, glad to report all have completely cleared up since going on a gluten-free diet (except lymph nodes, I guess they are still shotty :lol: ), and I was only loosely diagnosed with Celiac Disease. I've had several doctors suggest it, but my biopsy was okay (I was already gluten-free for biopsy, so stay on gluten until tests are finished) and I only have gluten sensitivity genes (two of them). Basically, what I'm trying to say (in a long-winded fashion) is give the diet a shot regardless of your test results, because I can attest to miraculous results.


2010- Gluten, Soy, Corn, Dairy, Eggs, Nut free. Sugar, non-gluten grains lite(Yes, still plenty to eat!)

2010-Doctor diagnosed me as Celiac then took diagnoses back, then said avoid gluten for life

2009

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Many of your symptoms are ones that I had before I was diagnosed as Celiac, so it's definitely a possibility. If they have tested you for celiac and it's negative, you could always ditch the gluten and see how you feel.

There could be other issues, too, though.

1. Food allergies or sensitivities. The blotchy skin with exhaustion to match sounds a bit suggestive of that.

2. Have they tested you for MS? The exhaustion alone reminds me of a few of my friends who have this disease, and it sometimes goes hand in hand with celiac disease, so it might be something to check.

3. Mono might also be another one to look into, if the exhaustion is only a few weeks old.

4. Also..well, this'll be a weird one, but...have you been in the Southwest United States any time recently, or in the Sacramento area? Or been near someone who has? Did the exhaustion and such start after a cough that lasted a few weeks? If so, you could have Valley Fever. It is a regional illness from a fungus (you can get it from someone's clothing if they were in the region, too), so it is often not diagnosed if you visited the region but live somewhere else. Aching joints and exhaustion after the cough can last for months or years. A blood test is needed to check for this illness.

Just as an example from the 'what I have' standpoint: when I eat corn, my joints ache like crazy, even though no tests show any issues with it. I am celiac positive, and when I eat gluten, or corn, or a number of foods that I test as 'barely' allergic to, I am utterly wiped out, exhaustion-wise. I would always get sick and end up with lots of coughing or sinus infections after minor colds until I dropped gluten from my diet. I was utterly depressed until I dropped gluten.

My son had a lot of celiac symptoms, tested negative, but we took him off of gluten anyway. His symptoms went away. My husband gets totally congested and has sinus issues if he has dairy, even though he's not allergic to that, either. But when he stopped eating dairy due to a change in the family diet, all of a sudden, his constant sinus issues went away. Totally unexpected!

I'm not saying that this is what you have, but more giving examples that yes, these symptoms CAN be gluten issues. Like I said, could be other things too - the exhaustion can be indicative of so many things - but here's hoping you can find the answer soon!


T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

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Make sure they test your total IgA with the celiac panel! With the history of infections, you could be IgA deficient which would make the tests all negative even if you did have celiac.

I'd also get a print out of your thyroid tests (they did them... I hope.) and see what the levels are. Some doctors treat only when you are in pretty bad shape, other start treatment earlier. Check on nutrients levels too... especially Vitamin b12 and ferritin (iron stores).

Have they tested you for rheumatoid arthritis? the ankles and wrists with morning stiffness/pain sounds very typical. A certain number of people test negative in the blood work but still have the disease. It's definitely something to rule out.

And, definitely try the diet. Joints generally take longer than GI system to neaten back up, so be strict and give it at least 2-3 months.


2/2010 Malabsorption becomes dramatically noticable

3/2010 Negative IgA EMA; negative IgA TTG

4/2010 Negative biopsy

5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)

5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?

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Make sure they test your total IgA with the celiac panel! With the history of infections, you could be IgA deficient which would make the tests all negative even if you did have celiac.

I'd also get a print out of your thyroid tests (they did them... I hope.) and see what the levels are. Some doctors treat only when you are in pretty bad shape, other start treatment earlier. Check on nutrients levels too... especially Vitamin b12 and ferritin (iron stores).

Have they tested you for rheumatoid arthritis? the ankles and wrists with morning stiffness/pain sounds very typical. A certain number of people test negative in the blood work but still have the disease. It's definitely something to rule out.

And, definitely try the diet. Joints generally take longer than GI system to neaten back up, so be strict and give it at least 2-3 months.

I agree with the joints taking longer, for me it was about 6 months before I went into remission although I still have swelling in the mornings it resolves within an hour or two and I don't have pain.

Be aware also when they test your B12 that if you are taking a supplement with folate that can give a false 'normal' reading to the B12. Also it can take a long time after we stop utilizing B12 for the numbers to drop. If we have neuro symptoms it doesn't hurt to supplement with the sublinguals even if the numbers are above the 'usual' 250 cutoff. Our bodies will simply excrete the excess.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

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

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