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Non Coeliac Gone Gf-strange Symptoms


nikki-uk

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nikki-uk Enthusiast

I don't know if this is in the right place-bare with me.

My husband was dx with celiac disease 9 months ago.

My youngest child has recently been dx with dyslexia with severe behavioral/emotional dfficulties.He's been expelled from school.

There are quite a few links out there with dyslexia and other problems improving on the gluten-free diet.Thought I'd try him on it as we've nothing to loose.

To encourage my son into this I told him'If you do it,I'll do it'(gluten-free diet)

We are 3 weeks in,no noticable signs of improvement for my son as yet.

However I noticed weird things start happening to my body(this is so weird!)

First of all,within a week of going gluten-free the ezcema I have had on my face ,and scalp has completely cleared.My skin hasn't been this clear for years.

Also I have always suffered from constipation ,now (gluten-free)I'm a once a day girl(from a once a week if you're lucky.)

I seem to be eating a larger quantity of food but I've lost 8 pounds without trying.

All sounds great,but when I go to my friends house once a week,we always eat chicken and salad in a pitta bread.Not a problem you'd think as I'm not a coeliac.

Here's where it gets weird.The first week after the pitta bread I ended up in bed for 2 days with a migraine & vomiting.Just a coincidence?

The second week after the pitta bread,I woke up the next day with a banging headache and can only describe the feeling as akin to a monster hangover,but I didn't drink any alcohol.

Week 3 after the pitta bread,I woke this morning with these symptoms:

Headache,nausea

'Hungover' but had no alcohol

Racing heart

Massively sore tongue,eyes stinging.

The most scariest thing was 2 hours after the bread I came over red hot,sweating profusely,with nausea ,and the strangest 'tingling in my tongue and hands'

Now what's this all about?I don't know if it's the wheat or the gluten,allergy or intolerance.Never expected this to happen.My hands are still trembly and I want to sleep for a week.

Help!


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MySuicidalTurtle Enthusiast

Humans in general don't take well to wheat. So, it isn't too crazy that you saw health improvements. You could have an allergy or problems with gluten.

Going back on gluten will be harsh for your system, like you described. Just because you went without it and it is hard on humans systems.

Carriefaith Enthusiast
There are quite a few links out there with dyslexia and other problems improving on the gluten-free diet.
Really? would you mind posting them, I am very interested in this since celiac runs in my moms side of the family and her niece (my cousin) has dyslexia. Has the diet helped your sons dyslexia?

Anyway... back on topic.

I think you could have a sensitivity to wheat/gluten, an allergy wheat/gluten, or possibly celiac based on your symtoms and reactions. Have you been tested for celiac or wheat allergy?

nikki-uk Enthusiast

I'll try and post a linkOpen Original Shared Link

Open Original Shared Link

Open Original Shared Link

As I say,no visible signs of improvement yet,but we'll try anything,cos boy is that boy hard to handle!

Docs won't test him for celiac disease as he has no bowel symptoms,so I'd be refused if I were to ask for one.(nhs system in uk doesn't allow you to choose your doctor)He'd think I was paranoid 'wanna be Coeliac!'(LOL)

Maybe I'll start with skin prick allergy testing,see how much it costs ....

Carriefaith Enthusiast

Thanks!

Docs won't test him for celiac disease as he has no bowel symptoms,so I'd be refused if I were to ask for one.(nhs system in uk doesn't allow you to choose your doctor)He'd think I was paranoid 'wanna be Coeliac!'(LOL)
That's too bad :( he should understand that you just want to help your son. Of course you don't want him to have celiac disease. You just want to help him get better.

I don't understand how some of these people become doctors. They are smart but some of them have no people skills and they don't think outside the box. "Well if my outdated textbook doesn't have it then it's not true".

Don't get me wrong here... I know there are many wonderful doctors :) My doctors are in the wonderful category compared to some of the stories I have heard.

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    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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