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Local Mega Clinic Graded D, Apparently Not Only Does It Say I'm Celiac Free, But Of All Allergies

Serversymptoms

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Serversymptoms Contributor
Serversymptoms
Posted

My local mega clinic ( really a hospital) I'll give it a grade D. Apparently not only did my blood test say Celiac free, but also for any allergies that was tested on it. I know that I'm allergic to something, and have been seeing vast improvements since removing it from my diet such as:

Finger nail growth, teeth adjusting, skin healing, feet cullucs ( however you spell it) healing, rash healing, depression/ anxiety decrease, hair texture improving, exzema clearing, and the list goes on..... The lump on the back of my head have seem to have done little changes, but I'm looking forward to it doing so.

I have been on a gluten free diet for about two weeks. During those two weeks I did do simple test of consuming gluten... I experience bumps on my neck, throat feel clog, bloated stomoach etc.... This week my doctor decided to give me a blood test and I recieved the results and all was clear. I mention to my mom ( I'm 17 years old) since my consumption of gluten have been so low in two weeks, I'm not surprise false results have shown up. Now I consumded wheat today through crackers. Few minutes later I now feel drossy ( eyes as if they want to close shut), red spots on neck, and eczema trying to make way.

What do you think of those test results? I know I'm allergic to something, and this is not all in my head. I'm very dissapointed in what I'm being told by my local mega clinic, and most of my family which doubt and happenly to overlook my symptoms. As soon to be a college student ( after senior year), it may do me more well to move close to the West Coast ( California, Arizona, Oregon, Washington etc...) for vast reasons. This is really disturbing......

Anyone have things to mention on this topic?

My neck is also starting to have a itch to it

( I mean I know there is something causing all these symptoms, and my local health facility still can't detect cause? If I'm not celiac that would be great, but to tell me there is nothing wrong is ridiculous.)

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mushroom Proficient
mushroom
Posted

Yes, as you seem to know, you need to be consuming gluten for your tests to be valid. Even then there can be false negatives. The blood tests measure antibodies in the blood and you stop making them in the absence of gluten. I do not know what other testing you had done, or even if you had the full celiac panel. You should get a copy of your test results and post them here, along with the reference ranges.

Serversymptoms Contributor
Serversymptoms
Posted
  • Author

Exactly, my doctor knew I wasn't consuming any gluten for two weeks and I gave that notice to her. I have no clue what her intentions are, besides diagnosing me wrong. Clearly she should of had me eat gluten for a few days ( no gluten diet) and then test my blood. Im very disappointed in my local mega clinic, I know I have allergies, allergic to something ( and lead to other health problem which I've seen improve on the gluten free diet). I'm now experiencing a few symptoms since eating those crackers.... I'm only 17 and really would like opinions on my situation/ what I should do. I appear that I may be celiac, though with my doctor telling my mom I'm not, my mom may stop buying gluten free products. I now feel the urge/ need to move out of my hometown ( partly due to the local health system... I mean who really wants to live in a city that wont take care of their health?). After senior year I'll be off to college, the way things are looking.... probably not in Michigan.

ravenwoodglass Mentor
ravenwoodglass
Posted

Are the bumps you got itchy? If so they may be DH if you can get into a dermatologist they can do a biopsy of the tissue next to the lesions to see if it is DH. A diagnosis of DH is a diagnosis of celiac.

Also if you live in an area that has a Wegmans grocery store they label really well as far as gluten goes. If it has a circle G it is safe to eat.

Listen to your body, if things are improving on the diet then you don't need a doctors permission to be gluten free.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

If the hospital did allergy testing, then they likely tested you for wheat allergy, which is not the same as celiac disease. And, yes, you need to be consuming the equivalent of 4 slices of bread per day for 3-4 months for the celiac blood panel to be accurate.

As mentioned above, it sounds like you have already figured out the source of your problems--gluten. You do not need any more testing nor a doctor's permission to keep it out of your diet. In fact, there are advantages to NOT having a diagnosis: insurance companies use a diagnosis of celiac as a reason to deny insurance coverage they call it a "pre-existing condition").

However, if you have other symptoms that DON'T resolve on a gluten-free diet, then you would need to consider further testing to find the cause(s).

Serversymptoms Contributor
Serversymptoms
Posted
  • Author

Thanks for replies

There are no advantages that I'm not diagnose because I need a confirmation of my health condition. One reason, my gluten allergies have lead to many other health problems ( affected my grades, concentration/ focus problems etc...). This is a needed explanation for my grades to universities, and a confirmation. Also as a college student it would be helpful for me to alarm the universities that I'm gluten intolerance ( as it seems), so I can be provided with right things, but a doctor confirmation is needed. I also could get the proper help for my few months going gluten free, and what things I shoudl stay away from. I would be excited if I get a real confirmation that I'm celiac ( as it seems). So much more I can write...

Why cant I just get a biopsy? I'm out on the limb my own here....

ravenwoodglass Mentor
ravenwoodglass
Posted
Thanks for replies

There are no advantages that I'm not diagnose because I need a confirmation of my health condition. One reason, my gluten allergies have lead to many other health problems ( affected my grades, concentration/ focus problems etc...). This is a needed explanation for my grades to universities, and a confirmation. Also as a college student it would be helpful for me to alarm the universities that I'm gluten intolerance ( as it seems), so I can be provided with right things, but a doctor confirmation is needed. I also could get the proper help for my few months going gluten free, and what things I shoudl stay away from. I would be excited if I get a real confirmation that I'm celiac ( as it seems). So much more I can write...

Why cant I just get a biopsy? I'm out on the limb my own here....

You can just get the biopsy, if your insurance will cover it, but there is a risk of false negative there also. In addition if you have been seeing the same doctor for a bit who is aware of your issues it is possible that if you follow the diet and those issues resolve he may be able to base a diagnosis of gluten intolerance on that recovery. You should talk to the doctor about that.

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Serversymptoms Contributor
Serversymptoms
Posted
  • Author
You can just get the biopsy, if your insurance will cover it, but there is a risk of false negative there also. In addition if you have been seeing the same doctor for a bit who is aware of your issues it is possible that if you follow the diet and those issues resolve he may be able to base a diagnosis of gluten intolerance on that recovery. You should talk to the doctor about that.

Oh wow, false negatives with a biopsy... how?

I also think it's worth to mention, sometimes I think it could also be yeast inseated of wheat/ gluten. I'm really not sure, though I thought a biopsy would be most accurate if not 90%.

ravenwoodglass Mentor
ravenwoodglass
Posted
Oh wow, false negatives with a biopsy... how?

I also think it's worth to mention, sometimes I think it could also be yeast inseated of wheat/ gluten. I'm really not sure, though I thought a biopsy would be most accurate if not 90%.

We have about 22 ft of small intestine, the damage from celiac can be patchy and first and sometimes an area that is not effected is biopsied. One reason a lot of biopsies should be taken. Also there are changes that are seen before the villi are totally destroyed that are sometimes not taken into account. In addition for some of us, the best example would be those with DH, a celiac skin condition, can have celiac but not yet have damage to the small intestine. Some with DH never get gut issues but still are considered to have celiac.

The last one I can think of off hand is when a doctor sees a person who is at say stage 1 on the Marsh Scale but doesn't consider them damaged enough, yet to diagnose.

Serversymptoms Contributor
Serversymptoms
Posted
  • Author

Had a bag of chips with msg, and experience a rapid increase in symptoms... and notice I had the same symptoms from eating the same bag of chips yesterday. Looked up msg intolerance online, and my symptoms were common. I also found out that many celiacs ( as I've came across before) are msg intolerance. I now feel more that I may be celiac, as I also experience msg intolerance and symptoms ( nearly all plus more) of being celiac.

I'll start avoding msg, I did notice having symptoms with food containg msg, though this was mainly chips. Still in question on whether I celiac.

leadmeastray88 Contributor
leadmeastray88
Posted
I'll start avoding msg, I did notice having symptoms with food containg msg, though this was mainly chips. Still in question on whether I celiac.

Have you spoken to your doctor since your last visit? If you're very concerned about your health I would definitely recommend revisiting the issue, and discuss further testing. The longer you wait, the more your health will deteriorate. If you're not getting anywhere with the doctor you have now you should maybe consider finding a new one. Your health is precious and is obviously affecting your quality of life. I hope you can get some decent help soon!

Serversymptoms Contributor
Serversymptoms
Posted
  • Author

Yes I go back and see my doctor end of June. Though the only symptom she has been looking into is anxiety/ depression... which has decreased a lot. I just don't see how my other symptoms can be ignored when clearly there is a health problem causing it. Once I find out what the cause is, I think I'll be done having visits to that hospital... possibly for years, or forever... since now in the near future after undergraduate ( if accepted into a michigan school) I plan to move out of state for graduate school.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Some of us couldn't care less if we are labeled "celiac" or "gluten-intolerant" or "gluten-sensitive" or whatever. We know that gluten causes our symptoms just as much whether the biopsy was positive or negative, so we avoid gluten (which is NOT that difficult if you know what you are doing) and move on with our lives.

Of course, we could sit around, keep eating gluten, and wait for there to be enough damage to convince every doctor in the universe, but that would be like being allergic to peanuts, and continuing to eat them until we had an anaphylactic reaction before finally admitting that peanuts cause us problems.

Serversymptoms Contributor
Serversymptoms
Posted
  • Author
Some of us couldn't care less if we are labeled "celiac" or "gluten-intolerant" or "gluten-sensitive" or whatever. We know that gluten causes our symptoms just as much whether the biopsy was positive or negative, so we avoid gluten (which is NOT that difficult if you know what you are doing) and move on with our lives.

Of course, we could sit around, keep eating gluten, and wait for there to be enough damage to convince every doctor in the universe, but that would be like being allergic to peanuts, and continuing to eat them until we had an anaphylactic reaction before finally admitting that peanuts cause us problems.

Because I would like to know for sure what to avoid and not. I mean I now know I'm mosodium glutamate intolerance, seems like everytime I consume it.... my symptoms kick in. Lump on the back of my head may swell ( if high amounts consume) and I will get aches, drowsyness etc... though I also was told many celiacs are also msg intolerance which makes me think even more I'm gluten intolerance as well. I'm currently avoiding gluten and msg.

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