What do I have?!

[AshyCo]

Hello everyone! I am 16 yrs old and I’ve been dealing with health problems since 14 or 15… It started out as just gluten now it’s gluten, dairy, eggs, and possibly yeast and red meats😭 I don’t know what it is! Everyone was positive I had celiac disease but it was negative?! I have brain fog, light headed, headaches, blurry vision, mouth rash (around my mouth), chronic tiredness, shortness of breath, pain of chest, weakness, pain under rib, lotsss of stomach issues and constipation but also diarrhea too, also my legs will get cold, turn purple/blue, numb, hurt superrr bad, swell up… All when I’m eating these things… I’m so confused what it is and my doctor is doing nothing to figure out what is wrong with me… I’m constantly tired and sick and I can hardly do anything😭

[AshyCo]

Umm also, I have to sleep propped up or else I can’t sleep and it’s not comfortable. I have to prop my legs up or push them against something…

[Scott Adams]

Welcome to the forum. So you've been gluten-free for a while, is that correct? You mentioned a negative celiac disease test, can you share more about which test you took, and if possible, can you share the result with us, including the reference range of the test given?

If you were not eating enough gluten before the test, it's possible that you got a false negative result.

I mentioned this in the other thread you posted in, but approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

 

[AshyCo]

  On 5/14/2024 at 6:27 PM, Scott Adams said:

Welcome to the forum. So you've been gluten-free for a while, is that correct? You mentioned a negative celiac disease test, can you share more about which test you took, and if possible, can you share the result with us, including the reference range of the test given?

If you were not eating enough gluten before the test, it's possible that you got a false negative result.

I mentioned this in the other thread you posted in, but approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

 

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Yes I have been gluten-free for a while now.

I had the endoscopy done but no blood work. They didn’t give me anything except to tell me that everything looked fine. This obviously shocked everyone.

I had quit eating gluten before but when I was scheduled for the endoscopy I went back on gluten and as far as I know I was eating the proper amount.

My chiropractor and some friends have mentioned the possibility of me having POTS- Postural Orthostatic Tachycardia Syndrome??

[Dollface71x]

Not a doctor, but a lot of these symptoms sound like they could be a result of hypothyroidism! I would get your thyroid checked, if at least to rule that out too. 🖤

[AshyCo]

  On 5/14/2024 at 6:48 PM, Dollface71x said:

Not a doctor, but a lot of these symptoms sound like they could be a result of hypothyroidism! I would get your thyroid checked, if at least to rule that out too. 🖤

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Okay, I’ll look into that for sure! Thank you!!!💗

[AshyCo]

  On 5/14/2024 at 6:48 PM, Dollface71x said:

Not a doctor, but a lot of these symptoms sound like they could be a result of hypothyroidism! I would get your thyroid checked, if at least to rule that out too. 🖤

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I just looked at 20 symptoms of this and you are right, I have almost all of them! I could be having hypothyroidism and some kinda food thing going on? Who knows!!🧐

[Scott Adams]

Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy, and approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

 

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"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

• Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
• Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

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and this recent study recommends 4-6 slices of wheat bread per day:

 

 

[BethMJ]

I was told I didn't have celiac after my endoscopy and was eating gluten at the time of testing.  I did genetic testing which came back positive.  I was diagnosed with hypothyroidism and the endocrinologist I went to said I had celiac.  He was right I follow a strict gluten free diet.  I have been diagnosed with Hashimoto's Thyroiditis which is also an autoimmune issue and goes hand in hand with celiac and/or NCGS.    You could try following an elimination diet but I'd have your thyroid check out first.  It can take 4-6 weeks for thyroid levels to shift after being on medication, Just FYI 

[AshyCo]

  On 5/14/2024 at 11:35 PM, BethMJ said:

I was told I didn't have celiac after my endoscopy and was eating gluten at the time of testing.  I did genetic testing which came back positive.  I was diagnosed with hypothyroidism and the endocrinologist I went to said I had celiac.  He was right I follow a strict gluten free diet.  I have been diagnosed with Hashimoto's Thyroiditis which is also an autoimmune issue and goes hand in hand with celiac and/or NCGS.    You could try following an elimination diet but I'd have your thyroid check out first.  It can take 4-6 weeks for thyroid levels to shift after being on medication, Just FYI 

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Oh wow so I could actually have Celiac even this it was negative!!

I will definitely be looking into these things!! Thank you so much!!!✨✨

[trents]

Genetic testing cannot be used to diagnose celiac disease since 40% of the general population have one or more celiac genes but only about 1% actually develop celiac disease. Genetic testing can be used more effectively to rule out celiac disease. That is, if you don't have any of the celiac genes, you probably don't have celiac disease but you still could have NCGS (Non Celiac Gluten Sensitivity).

[AshyCo]

  On 5/15/2024 at 3:52 AM, trents said:

Genetic testing cannot be used to diagnose celiac disease since 40% of the general population have one or more celiac genes but only about 1% actually develop celiac disease. Genetic testing can be used more effectively to rule out celiac disease. That is, if you don't have any of the celiac genes, you probably don't have celiac disease but you still could have NCGS (Non Celiac Gluten Sensitivity).

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Hmm okay thanks for the info

[Cspruill]

  On 5/14/2024 at 6:27 PM, Scott Adams said:

Welcome to the forum. So you've been gluten-free for a while, is that correct? You mentioned a negative celiac disease test, can you share more about which test you took, and if possible, can you share the result with us, including the reference range of the test given?

If you were not eating enough gluten before the test, it's possible that you got a false negative result.

I mentioned this in the other thread you posted in, but approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

 

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I have allergies. Celiac is not an allergy. I can’t come in on celiac.

[trents]

  On 5/22/2024 at 2:00 AM, Cspruill said:

I have allergies. Celiac is not an allergy. I can’t come in on celiac.

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What do you mean by you "can't come in on celiac"?

[Scott Adams]

  On 5/22/2024 at 2:00 AM, Cspruill said:

I have allergies. Celiac is not an allergy. I can’t come in on celiac.

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I did not call celiac an allergy.

[AshyCo]

I went to my new doctor today and he figured all this out today… Plus more that I can’t remember

 

Scoliosis

 

Food allergies

 

Possible Reynolds

 

One ovary is stuck

 

Under rib pain is my Liver

 

Have caved ribs, sticking out ribs, and some stuck ribs

 

Right shoulder is messed up

 

Right shoulder blade pain is from stomach issues

 

Something on my forehead and cheek bone is messed up

 

Right sinus isn’t flowing good

 

Possible autoimmune

 

Upper back and neck is completely messed up

 

Right arm was messed up from falling and catching myself with it

 

Tick or parasites problems

 

Leaky gut

 

Vessels flowing into thyroid aren’t flowing good

 

One of kidneys aren’t working right

 

Nutrient deficiency

 

Low zinc

 

Small intestine was really bad

 

Spleen was enlarged (not supposed to be able to feel it but he could)

[trents]

@AshyCo, that was a remarkable doctor visit! How long did all that examination and diagnosis take?

[Scott Adams]

So your MD diagnosed all of this? It seems like many tests must have been run to find such a large array of issues. These are what stick out to me, in relation to gut health, and I'm not sure what the findings were, or what tests were done to determine them:

• Food allergies
• Possible autoimmune
• Tick or parasites problems
• Leaky gut
• Small intestine was really bad

PS - If you have gluten sensitivity/celiac disease and remain gluten-free, these issues should improve, with the exception of parasites.

[AshyCo]

  On 5/22/2024 at 7:05 PM, trents said:

@AshyCo, that was a remarkable doctor visit! How long did all that examination and diagnosis take?

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Only about an hour!

He is an amazing doctor I’ve only heard good things about him!!

[trents]

  On 5/22/2024 at 7:16 PM, AshyCo said:

Only about an hour!

He is an amazing doctor I’ve only heard good things about him!!

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Was this doctor and MD or a DO or an alternative medicine doctor?

[AshyCo]

  On 5/22/2024 at 7:08 PM, Scott Adams said:

So your MD diagnosed all of this? It seems like many tests must have been run to find such a large array of issues. These are what stick out to me, in relation to gut health, and I'm not sure what the findings were, or what tests were done to determine them:

• Food allergies
• Possible autoimmune
• Tick or parasites problems
• Leaky gut
• Small intestine was really bad

PS - If you have gluten sensitivity/celiac disease and remain gluten-free, these issues should improve, with the exception of parasites.

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He did lots of things but also there is more than just gluten… There is quite a few other foods i recently can’t have anymore. Not really sure why yet but we’re trying to figure it all out.

  On 5/22/2024 at 7:18 PM, trents said:

Was this doctor and MD or a DO or an alternative medicine doctor?

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He is a DO! 

[knitty kitty]

@AshyCo,

I'm curious.  What other foods are you reacting to?

[AshyCo]

@knitty kitty

i can’t have gluten, dairy, eggs, and possibly red meat, yeast, and gelatin as well

@knitty kitty

sorry it took so long to reply!

[BethMJ]

Hopefully, some of the limitations will only be temporary.  As your body heals you may be able to reintroduce foods and eat them sparingly.  Not gluten though. Hope you are feeling better already!

[AshyCo]

  On 6/10/2024 at 10:09 PM, BethMJ said:

Hopefully, some of the limitations will only be temporary.  As your body heals you may be able to reintroduce foods and eat them sparingly.  Not gluten though. Hope you are feeling better already!

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Maybe so!! No eggs make the baking a lot harder😅