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Is Self-Diagnosis Of Gluten Intolerance Possible? My Symptoms, And What I Hope To Fix.

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Stats: 32 years old

Height: 5'10"

Weight: 200 lbs

I'm searching for answers to neurological issues I have and feel that Gluten may be the culprit.

Childhood Possible Symptoms:

- I was unable to drink formula as a baby, I would vomit it up. I assume formula in 1978 had Gluten in it.

- I was 'allergic' to milk. My mother said I could have small amounts of Goats milk and I could tollerate that.

- I had a very sensitive stomach as a baby and child

- I got Carbuncle's every year from about age 4 to 13. These are massive boils found randomly on the body that have multiple "openings". They are disgusting and I had to have surgery to remove a huge one from my leg at about 7 years old. http://en.wikipedia.org/wiki/Carbuncle

- I was sick all the time

- Doctors told my mother that I had a weak immune system.

- I had severe social anxiety, and still do as an adult. I can 'snap' out of it only on rare occasions.

- Did very poor in school, even though I was/am very smart. I put all my mental focus into computers and didn't pay attention to anything else. I could never focus or pay attention for long enough. My mind drifts off and I'm in a fog/day-dream constantly.

Adult Possible Symptoms:

- I feel sick and tired after eating bread products, e.g. pizza or a sandwhich. This has gotten worse as I get older. Used to be I would slow down and not really "think" after lunch. Now I feel like I shut-down about an hour after lunch. I feel anxious inside, biting my fingernails a lot and need to go home and be by myself.

- I'm generally very moody. I have empathy but it rarely "kicks in".

- My Psychiatrist has diagnosed me PDD-NOS. Some autstic like traights, but not enough to say autistic/aspergers. She is very confused by me, saying I don't fit the criteria because I am capable of doing things autsitcs/aspergers can not, but I just chose not to. For me, I never do anything because I always feel sick and tired.

- I have very poor working memory. I can't visualize angles when playing pool for example. I can't hold math problems in my head to work on them. I can't visualize what a horse would look like then change the picture in my mind.

A few years ago, I slowly started changing my diet. I lost 80lbs in a year, down to 200lbs now. I cut most bread out, but not 100% and never paid attention to gluten in pre-packaged products, etc.

I've had a huge awakening in mental clarity in the last year. I feel much less in a fog and much less anxiety/depression. I'm just not 100%. I still feel kind of sick generally, and never really feel "GOOD".

The idea of going on a gluten-challenge, that is, eating lots of it to get a diagnosis makes me want to vomit. I hate how I feel after eating bread. Slow, lethargic, and bad inside. Note, I can eat sugary non-gluten things and not have this happen. E.g. a bag of Kettle Corn Pop-Corn.

I have a 3 year old son. He complains all the time that his stomach hurts, ever since he started talking almost. He also got a PDD-NOS diagnosis, and with similar confusion from his doctor. He doesn't fit the criteria, but he also does in strange ways. He is very moody, seems to have anxiety already, and has big social problems in school, much like his dad did.

So, I've been gluten free for a couple days now. The whole family decided to go gluten-free. We're also cutting out 99.9% of all dairy for a while.

I think I feel a little better already, but it's too soon to tell and could be placebo.

Does anyone else relate to my story?

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Hello, and welcome to the forum.

I am so sorry that you have been suffering all your lilfe from your symptoms. They do certainly sound to me like you have terrible problems with gluten, probably your son also. All the symptoms you describe have been experienced by at least someone on the board here as a result of gluten. Some people get more gastrointestinal symptoms, others have more neurological symptoms. The "brain fog" as most people here describe it is very common, as is the general and social anxiety. Also many celiacs/gluten intolerants have autistic traits - you will find quite a few here on the board.

The "typical" celiac in a doctor's mind is underweight but just as many have problems with weight gain and lose a lot of weight when they eliminate gluten. So even though you have not eliminated it, just by cutting it down you have helped your body realize that it is not starving and does not have to hang on to all those calories it has been storing away.

Then of course you have the gastrointestinal symptoms of feeling sick after eating, a "sensitive" stomach, lactose intolerance, poorly functioning immune system (it is already overloading trying to deal with the gluten) leaving you susceptible to getting sick whenever a virus came along.... yes, I am afraid it does all add up to gluten intolerance in my book.

Now if the idea of going back on gluten to get tested does not set well with you (we can all relate to that :P ) then it is perfectly all right to do the diet on your own. Many people (including me) have self-diagnosed and gone gluten free of our own volition. However, I think it would be a good idea to keep your son eating gluten and try to get a diagnosis for him so that special accommodation can be made for him during his education when he will need to be kept safe from gluten if that is what it turns out to be. Do not take him gluten free until he has had the testing done, and make sure actually that he is eating quite a bit of gluten before you get him tested. The diagnosis is important for your son so that the schools will have to respect that piece of paper that says he should not have gluten. They do not normally just listen to the parent. You do know , of course, that intolerance to gluten is a genetically based condition and your son has probably inherited the gene from you, just as you must have from one of your parents (and here again, we are assuming that it is gluten because you are already feeling better without it and no, I don't think it is a placebo effect.)

Do be aware that in order to feel 100% better you do have to do the diet very strictly, 100% :D, also. Which means you must ferret out all the hidden gluten in foods, and gluten can be very sneaky, like in soy sauce and marinades and salad dressings and all kinds of places you would not think to look. So you must read every label.

So come back and ask any specific questions you have and we will do our best to answer them, but I think you can look forward to feeling much better. :)

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Amongst those diagnosed with celiac, only 5% are underweight, while 39% are obese, so the typical celiac is overweight.

Now all your symptoms sound celiac.

Also, there have been some discussions on boils, more precisely Hidradenitis suppurativa, being caused by gluten, and it goes away on a gluten-free diet but doctors do not know that.

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I think you can trust the feeling that you are doing better on the gluten-free diet. As you get better it will be easier to trust yourself as you begin to achieve a feeling of inner health and strength. This has happened to me and I have a lot easier time with relationships. I have relaxed and now when I smile it is a real and warm smile and people respond to my sincerity.

When my diagnostic tests for celiac disease came back confusing I ordered a genetic marker test from www.Enterolab.com. I did not want the endoscopy and the gluten challange. The test confirmed that I had been at high risk for developing celiac disease and non-celiac sprue and I, too had problems as a child similar to yours and was always criticized for not doing as well as I should have. Another test that does not require a gluten challange is the molecular serology test offered by Prometheus Labs and others. This test can tell if you have an antigen binding site which accepts fragments of gliadin, the gluten protein that starts off the production of the autoimmune antibodies.

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