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What do I have?!

AshyCo
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AshyCo Apprentice
AshyCo
Posted

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😭

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AshyCo Apprentice
AshyCo
Posted
  • Author

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 Grand Master
Scott Adams
Posted

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 Apprentice
AshyCo
Posted
  • Author
10 minutes ago, 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.

 

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 Newbie
Dollface71x
Posted

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 Apprentice
AshyCo
Posted
  • Author
34 minutes ago, 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. 🖤

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

AshyCo Apprentice
AshyCo
Posted
  • Author
39 minutes ago, 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. 🖤

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!!🧐

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Scott Adams Grand Master
Scott Adams
Posted

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.

 
Quote

"...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;

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

 

 

BethMJ Newbie
BethMJ
Posted

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 Apprentice
AshyCo
Posted
  • Author
2 hours ago, 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 

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 Grand Master
trents
Posted

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 Apprentice
AshyCo
Posted
  • Author
On 5/14/2024 at 10:52 PM, 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).

Hmm okay thanks for the info

Cspruill Newbie
Cspruill
Posted
On 5/14/2024 at 2:27 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.

 

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

trents Grand Master
trents
Posted
1 hour ago, Cspruill said:

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

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

Scott Adams Grand Master
Scott Adams
Posted
16 hours ago, Cspruill said:

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

I did not call celiac an allergy.

AshyCo Apprentice
AshyCo
Posted
  • Author

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 Grand Master
trents
Posted

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

Scott Adams Grand Master
Scott Adams
Posted

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 Apprentice
AshyCo
Posted
  • Author
10 minutes ago, trents said:

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

Only about an hour!

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

trents Grand Master
trents
Posted
1 minute ago, AshyCo said:

Only about an hour!

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

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

AshyCo Apprentice
AshyCo
Posted
  • Author
9 minutes ago, 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.

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.

1 minute ago, trents said:

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

He is a DO! :)

knitty kitty Grand Master
knitty kitty
Posted

@AshyCo,

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

  • 3 weeks later...
AshyCo Apprentice
AshyCo
Posted
  • Author

@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 Newbie
BethMJ
Posted

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 Apprentice
AshyCo
Posted
  • Author
1 minute ago, 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!

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

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    • knitty kitty
      any advice would be helpful

      By knitty kitty · Posted

      @Jane07, welcome to the forum! Have you been checked for nutritional deficiencies?  Malabsorption of essential nutrients is common in Celiac Disease.  Supplementing with vitamins and minerals that are commonly low in the newly diagnosed can help immensely with recovery.   Vitamin D is frequently low.  Vitamin D helps regulate the immune system and calm it down.  The eight essential B vitamins help repair and maintain our body's health.  Magnesium, calcium, zinc and other minerals are necessary, too.  Vitamin C helps, as well.  Benfotiamine, A form of Thiamine, has been shown to promote intestinal healing. Are you still consuming dairy?  Eliminating dairy may bring some improvements.  Have you tried the low histamine Autoimmune Protocol diet?  Developed by a Celiac, Dr. Sarah Ballantyne, the AIP diet can improve symptoms while healing.  
    • knitty kitty
      What would a diagnosis tell me?

      By knitty kitty · Posted

      Welcome to the forum! A blood test for Celiac looks for the amount of antibodies your body is producing in response to gluten.  An endoscopy looks at the damage done by the antibodies attacking the villi lining the intestines.   When you have a cold or infection, antibodies are made that attack the foreign invader.  In Celiac Disease, our immune system recognizes gluten as a foreign invader and launches antibodies against it.  However, the gluten particles resembles the same structural components in our body cells.  As a result, the anti gluten antibodies attack our own cells, causing damage like flattening villi in the intestines and also potentially attacking vital organs like the thyroid, the pancreas, the brain, and the heart.   Gluten itself does not stay in the body for years.  The anti gluten antibodies stay in the body for years.  Our bodies remember gluten and continue making antibodies against gluten which continue to damage our bodies for years.  Eventually, if not triggered by gluten ingestion for two years or longer, our bodies may go into remission and stop producing the antibodies and thus end the inflammation and damage. You should be afraid.  You should be very afraid.  Consuming gluten accidentally or intentionally can start the while cycle over again from the beginning.  And getting to that state of remission again can take years.   A dietician or a nutritionist can advise you on how to start and sustain a gluten free diet while meeting your nutritional requirements.  We need essential vitamins and minerals to heal and maintain our health.  The gluten free diet can be lacking in essential nutrients unless we eat mindfully.  A nutritionist can teach us which foods will help us meet our nutritional requirements, and help us correct nutritional deficiencies with vitamin and mineral supplements.  
    • cristiana
      UK Member Looking For Help - Recent Test

      By cristiana · Posted

      @LeeRoy83    Hello again.  Picking up on something else you said re: the shock that you may be a coeliac. It may has come as a shock to learn that coeliac disease is a possibility, but if that is the case, although it can be at times a bit of a nuisance not to be able to eat gluten anymore, it has been my experience that most of my friends and acquaintances who have it have adapted to it well, and are thriving.  Although statistically it affects 1 in a 100 people, I know more than that, strangely, so I can see first hand how the diet can make a big difference for most people. In the UK we are blessed with a wonderful selection of gluten free food on sale in the shops, which seems to be ever-increasing, well labelled food packaging making it easier to determine if food contains gluten, a fabulous charity called Coeliac UK who provide a lot of very helpful information, including a gluten free food app and guide that you can take shopping with you, and good follow-up care provided by the NHS.   But that's for another day - IF you have indeed got Coeliac Disease.   Do meet up with your GP, take a list of questions to ask, and then if he wants you to take the coeliac diagnosis a step forward do let us know if we can be of help  - we can walk with you every step of the way. Cristiana
    • trents
      Elimination diet think I may be Gluten tolerant next steps to get tested? Questions

      By trents · Posted

      No. That is, unless the dietician themself has a gluten disorder or is managing a close family member who does and therefore is immersed in it daily so as to be up on the nuances of eating gluten free. Otherwise, they just give you very general information which you can get online.  
    • trents
      UK Member Looking For Help - Recent Test

      By trents · Posted

      Yes, a very cryptic and uninformative lab result report indeed! But it does seem like this is typical for the UK. It's almost like the "professionals" in that healthcare system don't want you to try and figure anything out for yourself.
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