They All Seem To Relate

[teemaree]

I am sitting here astounded and confused and trying to understand if there is a co-relation with the things I am about to question and ask about.

I have found that this site is filled with so many knowledgable people on celiac... and I am just learning and wanting to know more....

And if anyone out there can advise me on their thoughts or experiences or just knowledge on these questions, I would sure appreciate it.

I was just sitting here thinking about the times I had presented myself to the doctors over my life time, with ailments and sickness, and was never given any answers or help.

Even to the point where my husband attended doctors visits with me, begging them and telling them there is something very wrong....

And I must have seen at least 4 different doctors in the same clinic and none of them were ever of any help to me...it got to the point that I just wouldn't go to the doctors, because I felt like I was wasting their time, and my money.

A good friend of mine could see that I was on the edge of destruction and begged me to please find help, as I was a shell of a person in everyway...

So I looked up a clinic that had a pshyciatric doctor as well as GP's... and I saw the GP thinking they would refer me for pshyciatric care... But was astounded to find myself being diagnosed with celiac.

I had heard of it, but never in a million years thought I would have it, or for that matter I really didn't know much about it...

But now with the magic of the net, I am now able to look back at the things I was presenting myself to doctors with in the past, and I am now only seeing that all of the things relate to auto-immune problems.

right back to childhood

#1 clue should have been the fact that I had no enamel in my teeth, the dentist said it may have happened from anti biotics as a child? I was constantly having repair work done on my teeth, till a couple of years ago, I said just pull all my top teeth out... I have had enough of the constant problems, and had a top denture put in... and will soon have to have the bottom ones done also..

#2 clue stunted growth... 4feet 11 inches...

#3. constant kidney problem and infections, urine in my blood... high albumin levels , and protein

had to be placed on an intovenous anti biotic drip for two weeks in hospital , trying to kill infection

(I just discovered this tonight.Damage is caused in the kidney by the abnormal buildup of a protein (IgA). Research suggests that this is due to an autoimmune disorder (involving the body's immune system)

#4. Migrain headaches and cluster migrains , having to go to hospital and get injections.

#5. infertility and 4 miscarriages

#6.Chronic fatigue, mono,

#7.viral meningitis.

#8.Sun allergy, where I break out in hives , again only tonight did I learn this...sun allergy

[ravenwoodglass]

There is a difference between the problems that are caused by a celiac's GI related inability to access the nutrients in food and the autoimmune aspect of it. There seems to be also a degree of inflammation with celiac or at least that was the case for me.

I think problems related to failure to absorb nutrients will resolve once the body has healed and won't reappear with a minor occasional accidental glutening. Problems that are related to the autoimmune issues, like DH and ataxia for example will show their heads with only small amounts of gluten. At least that is my personal experience although I can't say for sure this is always true with others.

[rinne]

Wow, you are one strong woman, I am happy for you that you finally have a good doctor.

[mushroom]

These are the things in your post that stood out for me, things I would never have thought to associate with celiac even if I had known about celiac at the time:

constant kidney problem and infections

After being a constant in my life these have now gone away, the infections that is; I have permanent impaired renal function from the prescribed anti-inflammatories for my RA.

Sun allergy, where I break out in hives , again only tonight did I learn this...sun allergy — though this is very rare. In sensitive people, direct sun exposure can trigger an immune system response that activates inflammatory cells or proteins in the skin. The result may be an itchy, red rash or hives (solar urticaria).

This happened to me a few years before self-diagnosis of celiac. My dermatologist was of no help. I thought it was an allergy to sunscreens. Used to get it on my hands in the car, then one day when on an outing (most of the time in the car) I got it all over my arms and hands with an inflammatory response and hives all over my body. Then for weeks after that the skin peeled, layer upon layer off my arms, until I am left with this incredibly thin skin that bruises when you look at it. Dh and I are a fine pair--he is allergic to cold, I am (it appears) allergic to sun.

flakey dry skin all the time

Well, I have to say that this one persists, but then so does my psoriasis (moisturise, moisturise, moisturise!)

constant period problems, heavy bleeding

Lifelong until the blessing of menopause.

crazy sleep patterns, wouldn't sleep, maybe getting 2 hours per night, I would get aggitated and hyper

One of the best parts of being gluten free is the joy of getting some sleep.

back facet joint problems

These seem to be improving.

I found your post very interesting because if these are as you say related to celiac well, (except for the UTI's) they are certainly not well known. Heck, most doctors don't even seem to know the well-known ones. Do you have a reference for the sun allergy?

[teemaree]

I am about to run out to work... but just quickly,

I discovered the sun allergy thing just last night.....I have had it bad for approx 27 years,

With me, if my skin gets sun on it, or sun burnt, the welts/hives come up... most things I have read say they last for 24 hours... mine last for two weeks or more...

I never knew why this would happen, I just knew that if I got sun on me, the hives would happen and itch is incrediable...

well last weekend I got sun on my back, and I'm itching there badly.. and the hives are covering my back, so i thought I would look it up on the net.... and was astonished to learn that it is an auto-immune problem...

Which then got me thinking,,,, maybe my celiac has a huge thing to do with this?..............

and from reading other things on the net , it also appears to effect people with lupus.... noone knows the exact reason of it.... and it's a very rare condition... some doctors know nothing at all about it...

people with solar urticaria (su) develop hives after exposure to visible and/or uv radiation that is found in sunlight - not heat itself!

In people who have su, something triggers a change in their blood at some point in their life. This is perhaps due to an antigen/antibody reaction, perhaps due to something they came into contact with that their body didnt like, perhaps due to stress.... Etc, etc... Perhaps, perhaps perhaps!! Nobody knows why this happens! Their bloods cells are no longer "normal". The cells themselves may be different in some way or they may now contain some kind of unknown compound or chemical which developed spontaneously. But no one nows exactly what is different about it either.

This change in their blood then manifests itself when the person is exposed to the sun's light. Visible and/or uv light, when it is exposed to an su sufferer's skin, triggers an allergic reaction as their blood (containing the su unknown chemical) thinks that the sun's light is a foreign invader. This then triggers the body's natural allergic reaction - the release of histamine and other things, eventually causing the hives/rash on the sun-exposed skin.

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I will find the reference for what I stated above , when I get home from work... okee dokee...

the address of this forum above... they are trying to figure out what is trigger....

I truly believe it has something to do with celiac... and other auto-immune problems...

[teemaree]

They are also saying on this site....

the following...

I made it go away!

After having suffered from Solar Urticaria for about 4 years... 10 days on high vitamine D has done so that I now can stay in the sun as I normally did!

So if you do suffer from this, try a few weeks on vitamin D calcium and see if this works for you too!

I am so happy!

and another post

Im a woman of 41, and I dealt with this for 4 years until about a month ago. I have been clinically tested and found that I was intollerant to both UVA and UVB light with a burn time of 13 sec. and 2,5 minutes.)

If you can, have a bloodtest made to check your leval of vitamine D, that help you on your way to find a cure for you, as it has me.

The leval of vitamine D in your blood, has to be around 25, my leval was way under 10, which normally is considered the leval for diagnosing patients with Rickets.

I have since this was discovered taken 4 tablets of vitamin D each with a 38

[mushroom]

So if you do suffer from this, try a few weeks on vitamin D calcium and see if this works for you too!

I have recently convinced my doctor to give me vitamin D supplementation at a high level (50,000 iu/wk) because my levels were "in the toilet" as ShayFL used to say--at the very bottom end of the scale. It will be interesting to see if that works. I have been avoiding the sun, especially because we have so little ozone down here!

Thanks for this info.

[teemaree]

Yes, please do let me know Mushroom, if the vitamin D makes a difference....

I always thought that sun was a way of getting vitamin D?...........( I need to look this up)

.ahhhh now I understand...

The sun makes your body produce vitamin D....

So if your body hasn't got vitamin D to start with.... it then draws from the calcium

Wow.... this is like a light bulb going on for me...shining a light on a problem I have had most of my life... and now I am beginning to understand why it happens..............

You know some people get devestated learning they have Celiac, to me it's finaly like the puzzle pieces are all starting to fit together! And things are finaly making sense.

The Calcium Back-Up Systems Sunlight on your skin also results in the production of inositol triphosphate, INSP-3, which regulates the extraction of calcium stored in cells. When not enough calcium is consumed, then INSP-3 is triggered to supply the cell with calcium from elsewhere in the body. If insufficient calcium is stored within cells, then the parathyroid hormone, stimulated by the deficiency of vitamin D, induces the extraction of calcium from the bones. Finally, if the calcium deficiency continues, over time the bones may become severely depleted by continual extraction of their calcium. Then, as a last resort, the body begins to extract calcium from proteins that regulate key cell functions. This, in turn, can lead to poor cell function. The real solution is to get enough high quality, natural vitamin D. If not enough vitamin D is available at the cell, the body can become calcium deficient over time In healthy people, regular sunlight exposure stimulates the production of many immune-boosting compounds. However, for those with a nutrient-deficient diet, regular sunlight exposure may be hazardous and can create free radical damage.

Dr. Zane Kime, a brilliant medical doctor and researcher, points out in his excellent book, Sunlight, that sunlight is very healthy for the skin and whole body metabolism when the body is nourished by sufficient nutrients. However, when hydrogenated oils and other toxic nutrients are consumed, the skin becomes imbalanced and sunlight exposure can produce toxic skin reactions

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Could the other toxic nutrients be gluten?

[GFinDC]

Just FYI, if you have had Vitamin D levels tested by Quest over the last couple of years they may have been incorrect results. This link to the NY Times article explains that not all their labs followed proper procedures, and materials were not reliable. They say they have corrected the problems now. The article is from 7-Jan-09. So in theory test results after that date would be ok.

The article is much longer, I just pasted in a snippet from teh headline below.

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NY Times

By ANDREW POLLACK

Published: January 7, 2009

The nation

[teemaree]

That is very interesting and useful information....

there must be many that were diagnosed with a vitamin D deficiency by them....

Wow.............thanks for sharing this