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Celiac Disease? Please help me

paigeeerose1

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paigeeerose1 Newbie
paigeeerose1
Posted

Hey! This is my first time on this site, so forgive me while I'll try figure it out haha. 

Hiya so I've had a lot of symptoms of celiac and my doctor had ordered a blood test. I went to get the results of the blood test with a different doctor but same clinic. The different doctor declared that my test was normal, and that the reason this was happening was because I didn't eat enough to vegetables. There was nothing she could do and she didn't know what's wrong with me "hope I feel better soon". She was a cow, offered no further testing or nothing. I was so angry and upset. So I have made an appointment with the nice normal doctor on Tuesday - May 3rd to see what more can be done testing wise. My question is how often is the blood test a false negative? I'm going to list some of my symptoms. 
-Stomach aches 
-Sharp pains
-Nausea 
-Constapation 
-Diarrhoea 
-Brain fog 
-Forgetful 
-Smelly gas 
-Mood Swings 
-Aniexty
-Weird rashes on my arms 
- Headaches (ALL THE TIME) 
-Bloating 
-Acid Reflux 
- My teeth ache all the time! 
-constant sore throats and mouth uslers 
This is most of my symptoms! Can someone please pleaseeeee help me :( I'm at a loss 

I also follow a vegan lifestyle as now, how can you not eat veges haha, thought I'd mention this. 

Also sometimes when I'm on the toilet I get oil in my poop? Weird? 

I'm a 15 year old girl, lives a pretty healthy lifestyle, just suffering right now. 
Thank you :)

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frieze Community Regular
frieze
Posted

perhaps a dietitian can help you make sure your vegan diet is balanced.  and yes, continue testing.

Darren Apprentice
Darren
Posted

Yes keep testing and only see a doctor you are comfortable with. You may not have celiac, many assume they do but you need to keep testing in order to find out for sure. You may be intolerant vs celiac or something else altogether. Dietician a great idea mentioned above. Hang in there and you'll get it all figured out.

RMJ Mentor
RMJ
Posted

It would be a good idea to get a printed copy of your test results so you can see the numbers and see whch tests were actually run.

Lock Newbie
Lock
Posted

Teeth hurt and headaches, very likely you are clenching and grinding your teeth in your sleep. This can cause constant daily headaches, tooth and jaw pain.  A good night guard should be fitted by a TMJ specialist (even if you don't have TMJ symptoms, like clicking and popping in your jaw joint, this type of doctor should fit you).  If you want to try something first just buy one of the cheap night guards at a pharmacy or grocery store that you heat in water and fit yourself.  You will know quickly if it helps your headaches and tooth pain. 

Oily stool can be a sign of something wrong in the GI tract and you definitely should be investigated further for not just celiac but a number of other digestive conditions.

I agree completely with the advice to consult a dietician.

SLLRunner Enthusiast
SLLRunner
Posted

Do you eat gluten, and we're you eating it on a regular basis prior to testing?  If you were not eating hluten, you can get a false negative.

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
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