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Do I Have Gluten Problems, Very Sick For A Long Time, Diet Best Way To Figure It Out?


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5 replies to this topic

#1 johnny555

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Posted 25 June 2013 - 01:29 PM

I think the Gluten free diet is in order, but I have never had the energy or motivation to do it. I've had Chronic Fatigue for 20 years, been out of work and sick most of that time. Everytime I think I am getting back on my feet I am hit again. Antidepressants have helped at times. I seem to match all of the symptoms. 

Exhaustion - Sleep 15 hours a day when bad
Constipation - Bad
Itchy all over
Food insensivities - corn, diary, sugar
Clinical Depression/Anxiety
Foggy Head
Sugar Cravings
Joint Pain

Is the diet the best way to figure out what is going on? There is "nothing" wrong according to all regular tests that the doctor would give you. I have not been tested for celiacs(or maybe I have but that doesn't matter I don't think. Just go for the diet? 
 


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#2 eblue

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Posted 25 June 2013 - 02:25 PM

It does sound like you have symptoms of celiac. I would get tested. A blood test can change your life.

But it is really up to you. Many people on here are unofficially diagnosed and do extremely well with a gluten free diet. However, just KNOWING is kind of nice, and would probably make it much easier to stick to the strict diet in the long run. If you do get tested though, be sure that you are eating plenty of gluten until the test, otherwise you get get a false negative. I hope you get to feeling better soon!


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#3 BelleVie

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Posted 25 June 2013 - 03:33 PM

Get tested! Once you go gluten free, your test results will no longer be accurate. 


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#4 1desperateladysaved

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Posted 25 June 2013 - 04:01 PM

If you have been eating gluten normally, now would be the time to get blood tests.  The final test is the diet and response to it.  Can someone please post the list of tests, so he can figure out what tests he needs.

 

Tests for antibodies for gluten

Tests to see what nutrients are low.

 

I hope you will soon be on the mend.  You have suffered long and hard.  I think you may have the right idea in thinking of gluten!

 

D


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#5 Mr. GF in Indiana

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Posted 25 June 2013 - 06:22 PM

You can only get a medical answer using the best tools of medicine available, which are now on the internet, such as pubmed.com, rightdiagnosis.com, and a hundred other web sites and forums.

RESIST jumping to conclusions. RESIST quackery and utter nonsense.

You don't mention your thyroid situation. Check it, re-check it, and research it. Also, adrenals.

You may have drug/supplement interactions, check and recheck on rxlist.com. MANY drugs and supplements will wallop someone with celiac disease or a dozen other metabolic diseases.

You may also have one of the common sensitivities/allergies: wheat, corn, milk, egg, etc.

If you think food is a cause, get serious about scientifically nailing down what foods you can eat without any reaction, then add a small amount of suspect foods and see if there is a reaction. This can take months of cautious effort, even years. Repeat each test several times. Some food reactions have no immediate visible symptoms, but the food still can damage the person, so that's a tricky problem.

Apparently, about sixty percent of those who are correctly diagnosed celiac still intentionally eat wheat, though, so if you are not motivated to devote yourself to a stringent diet and always looking to the long run, then there's no point experimenting with celiac. Also, it takes a huge amount of education and caution to be gluten free, due to our rather screwed up food supply system (example, restaurants will be a dangerous challenge). I doubt you will find quick or easy answers.

But first, foremost, if you will try these ideas: SEE A COMPETENT DOCTOR, or more than one as needed, and take nothing at face value. If you have anyone in your life who can help you with these things, have them double check everything with you and do their own internet research. Do not expect anyone in medicine to care or to be willing to research anything for you or even listen to you. As to celiac disease, less than 1% of the population seems to have it, so your hope that you may be on to your main problem...99/100 says you aren't.

I can't give you the benefit of my own situation or research, I don't have enough information and I'm not a doctor, but I will suggest you research whether you have narcolepsy or epilepsy and whether Provigil or xyrem will help you, neither of which are to be experimented with lightly. Oh...on that constipation, try three very small apples a day...yep, it's an effort. Or miralax. If the miralax makes you immediately and noticeably fatigued even more...research whether you have a "leaky gut".
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Best Wishes!    Gary

 

Misdiagnosed 62 years; finally medically confirmed Celiac/prolamin 2010

No corn, wheat, rye, barley, oatmeal, sorghum; rice is tolerated.  Salicylate sensitive.

Vitamin D and B deficiency, thyroid deficiency, bleeding disorder (all improving slowly).

Neurologically disabled, retired attorney.

 

Only you can take care of you; random advice from someone on the internet does not substitute for your own doctor!


#6 nvsmom

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Posted 26 June 2013 - 07:04 AM

Welcome to the board.

I'm good at spouting off tests so...The most common celiac tests are:

  • tTG IgA and tTG IgG
  • DGP IgA and DGP IgG
  • EMA IgA
  • total serum IgA (a control test)
  • AGA IgA and AGA IgG

You must be eating gluten in the weeks priopr to testing in order to have valid results.  The first three tests show damage to the villi of the intestine, and the last test shows a sensitivity to gliadin (gluten) which can be present in Non-Celiac Gluten sensitivity (NCGS) as well as in celiacs. 

 

This report has more info (pages 11-12): http://www.worldgast..._long_FINAL.pdf

 

Celiacs are often low is B12, D, ferritin, iron, potassium, calcium, zinc, and sometimes magnesium. About 1/10 celiacs have thyroid problems so you might want that checked too as that (hypothyroidism) could cause all the symptoms you listed as well. Request a TSH (should be near 1), free T3 and free T4 (should be in the 50-75% range of your lab's normal reference range), and TPO Ab.

 

Good luck. I hope you feel better soon.


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