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Robroc

Celiac symptoms ?

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I am writing for a friend of my daughter. 34 year old male - who somewhat suddenly developed chronic abdominal pain about 6 months ago.

The symptoms progressed to include chronic fatigue.  While he had insurance he had CT, Colonoscopy and Endoscopy - routine labs - 

nothing found - he had a celiac test - but not sure he followed the diet correctly before the test and there is also a type of Celaic that does 

not test positive. In short this person has been able to work during the last 6 months and has since lost his insurance and has been denied for medicaid.

I got a list of his symptoms  - and am hoping I can get some feed back from people with this disease to if his symptoms match up to this disease. Any input will 

be greatly appreciated ! >>> thanks Rob.

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Can only eat a few foods and once used to them cannot switch diet with out pain.
When stomach pain is bad it is always associated with bad back pain and leg pain. 
Extreme weakness/feeling faint if goes too long without food

General fatigue
Very easily fatigued after any physical activity
Intermittent malaise
Core muscles weakness

Lacy (spotty) apperence on skin seemingly associated with any physical activity

No ability to regulate temperature.. Overheats very easy... Over heating seems to lead to extreme weakness/feeling faint/fatigue/malaise type feeling

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Hi Rob and welcome :) You have found a good site with a supportive community!

Celiac can be difficult to diagnose because it can affect so many different systems in the body. There are links to further info and some hopefully useful answers to common questions in this topic: 

That said, I tested negative for celiac via blood and endoscopy but some people do not show up on the test for many reasons, but gluten is still a problem for them. It certainly is for me! Non Celiac Gluten Sensitivity is one catch all term for such people. So...

2 hours ago, Robroc said:

Can only eat a few foods and once used to them cannot switch diet with out pain.
When stomach pain is bad it is always associated with bad back pain and leg pain. 

I suffered lower back pain and associated sciatic pain down left leg. Largely resolved on gluten free diet.
Extreme weakness/feeling faint if goes too long without food

My capacity to regulate blood sugar was impaired prior to gluten free. I would be 'knocked out' after a big meal but could become very jittery, weak and light headed if I got too hungry.

General fatigue

Check!

Very easily fatigued after any physical activity

Check!
Intermittent malaise

Check!
Core muscles weakness

Check!

Lacy (spotty) apperence on skin seemingly associated with any physical activity

Not for me. I had other skin issues but not this. 

No ability to regulate temperature.. Overheats very easy... Over heating seems to lead to extreme weakness/feeling faint/fatigue/malaise type feeling

Check. I would sweat profusely on exertion or even without. I also got very cold. I used to habitually wear two pairs of socks and wrapped up to ludicrous degree in winter conditions. I think gluten and my thyroid didnt get on.

 I think your friend is on the right path. I'm sorry if he's not able to access medical care as it would be much better to diagnose this via a doctor and exclude anything else, or identify any other conditions should he have them. 

However there's no treatment if he does have it bar STRICT adherence to a gluten free diet. He could try keeping a food journal listing what he ate, when and how he felt. I did and managed to track down the above symptoms along with a LOT more. Gluten was giving me chest pains, eyesight issues, anxiety, depression, balance issues, palpitations, nerve twitches etc etc. I only began to identify them all by keeping a journal and your friend could do that and follow the diet to see if he can get some answers for himself. 

Best of luck to him and yourself

 

 

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4 hours ago, Robroc said:

Hey, robroc, I'm also pre-diagnosis and I hope my input can help you a bit from someone else who's suffering from similar symptoms.

Can only eat a few foods and once used to them cannot switch diet with out pain.

I don't have very much trouble eating non-gluten foods. Even milk I can tolerate. However, after I get glutened, I get diarrhea and I get very stiff with back pain. This usually lasts a couple days and ends with a migrane, probably from withdrawal.


When stomach pain is bad it is always associated with bad back pain and leg pain. 

I get arm pain. Not sure if it's nerve or joint pain, but after I ate at a Japanese Restaurant my eye problems hit me and I woke up with agonizing left arm pain.
Extreme weakness/feeling faint if goes too long without food

I never really paid attention to whether or not going too long without food made me worse, and frankly I'd rather not find out.

General fatigue

Every Celiac who is symptomatic probably has this to an extent. T


Very easily fatigued after any physical activity

Noticed this before I got the stomach pain. It was exacerbated by the fact that I had a hard time catching my breath during my daily exercises.

Intermittent malaise

Chances are, if you're tired, you probably feel pretty bad


Core muscles weakness

I lost my weight back in November, I only lost about 15 pounds and I look very skinny to say the least, but as you can probably guess I'm not the strongest looking guy in the world

Lacy (spotty) apperence on skin seemingly associated with any physical activity

Out of all the symptoms you mentioned this spoke out to me the most. It appears from time to time, but it looks like an octagon kind of pattern and it only shows up near my left thumb. I looked it up and it seems like those are called venules. I can't find any link between this and celiac disease but there's a secondary symptom of vasculitis called livedo reticularis and it seems to be very noticeable. However, unless you noticed it everywhere, it's probably nothing from what I can gather

 

No ability to regulate temperature.. Overheats very easy... Over heating seems to lead to extreme weakness/feeling faint/fatigue/malaise type feeling

I am normally very tolerant to high temperatures. Last summer was unbearable. I typically sat in the heat for hours without feeling fatigued.

As someone who is going through a similar situation, I hope you can get an affirmative diagnosis and not have to jump through any more hoops to figure out what's going on with you. I'm wishing you the best, and I hope the both of us can get through this unscathed.

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I think a lot of us can identify with his symptoms. The pattern you are seeing on his skin is likely something called livedo reticularis. In myself it seems to be related to inflammation. Before diagnosis the only thing that would alleviate this for me was an acupuncture session. it would be gone for a couple hours then reappear. I think it is associated with inflammation.  Mine reappears if I am glutened or very cold.

You mention he had routine labs. Did they do a celiac panel?  he may want to ask at his local hospital if they have a fund for folks without insurance. While my local hospital didn't cover doctors visits they did cover any lab tests and if they don't cover in full they may have a sliding fee scale. the other option is to have him go gluten free but it is best to try and get a diagnosis before deleting gluten if possible.

It might be helpful for him to come here if he is willing.

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