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Would You Call This Celiac?


delicatefade

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delicatefade Newbie

So basically my eczema has been getting worse and worse, so I decided to go see a Naturopath. She suggested that I do a blood allergy test. So, I did the blood test, which was sent to Meridian Valley Laboratory. My results came back last Thursday, and I was completely SHOCKED by what I saw!

Here's the list:

Dairy (this was an extreme reaction, off the charts) - this includes goat's milk too

Eggs

Gliadin

Gluten

Rye

Wheat

Pineapple (WHAT!!!!)

Flaxseed

Spelt

Triticale

Paprika

So, my ND never mentioned the word Celiac, yet every time I try to do a search for gluten free online, I end up at Celiac sites.

Anyway, yesterday was my first day officially eliminating all of the above foods. I pretty much cried and moped about all day. This is going to be hard work, and I'm just so scared that this is permanent. I will be eliminating for at least a month, and then trying to add them back, one by one.

What do you all think? Should I be worried about Celiac, or is it possible to just have all these allergies totally unrelated to Celiac?


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YoloGx Rookie

Sorry this is celiac pure and simple with leaky gut syndrome as a byproduct--thus the increase in "allergies". You need to not use old cutting boards and wooden bowls etc. as well as iron skillets etc. that absorb and give off gluten in use. You also need to wash your kitchen, pot holders etc. Also vitamins, shampoos and lotions etc. etc. Caramel coloring is made from barley etc. etc. There are lists here about these hidden glutens here on celiac.com. Its worth it even if a real bother at first. You will end up feeling so very much better, believe me!

Welcome to the Board by the way!

Bea

delicatefade Newbie

Awe, I was hoping not to hear that :( But thanks for the welcome... I'm sure I'll become a regular here :)

Ursa Major Collaborator

Well, most of those are covered by a gluten-free diet. Gliadin, gluten, wheat, rye, spelt and triticale all indicate celiac disease. Gliadin and gluten are the parts of the grain that make us sick, spelt is one kind of wheat, and triticale is a wheat/rye hybrid. The only other gluten grain not on the list is barley.

On top of that is eggs, dairy, pineapple, flaxseed and paprika.

Be sure you pay attention to possible reactions to tomatoes and potatoes and peppers, as paprika is a pepper and part of the nightshade family.

Make sure you buy a new toaster if you will be eating gluten-free bread. Most of it isn't edible unless you toast it.

You can try adding dairy, egg, paprika and pineapple back into your diet after a while. If you try adding gluten products back in, you will likely get a nasty surprise. It isn't likely that you will EVER be able to eat those again. Because if you have celiac disease, it is life long.

delicatefade Newbie

Is there no possible way that I can have a gluten allergy without having Celiac?

neesee Apprentice

You've been tested for allergies, not celiac. You need to go to your family Dr. and ask for a celiac panel.

neesee

YoloGx Rookie

It is very possible to be very allergic to gluten and not have celiac. It is a little easier to live with though in many ways its pretty much the same. The difference I think is that you react less to trace amounts of gluten. Let's hope you are that lucky. Sounds like your doctors should be able to do some tests for you to determine what is what. Part of the test too will be simply re-introducing the gluten and see what happens later on...Dangerous but necessary it seems. Life itself may present some of these "opportunities" to you in the way of trace amounts if nothing else. Once your intestines heal often one reacts a little less violently, however if you keep eating the gluten it gets bad again and/or causes degenerative diseases. Its why the Merk manual calls its effects Insidious.

Bea


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jerseyangel Proficient
So basically my eczema has been getting worse and worse, so I decided to go see a Naturopath. She suggested that I do a blood allergy test. So, I did the blood test, which was sent to Meridian Valley Laboratory. My results came back last Thursday, and I was completely SHOCKED by what I saw!

Here's the list:

Dairy (this was an extreme reaction, off the charts) - this includes goat's milk too

Eggs

Gliadin

Gluten

Rye

Wheat

Pineapple (WHAT!!!!)

Flaxseed

Spelt

Triticale

Paprika

So, my ND never mentioned the word Celiac, yet every time I try to do a search for gluten free online, I end up at Celiac sites.

Anyway, yesterday was my first day officially eliminating all of the above foods. I pretty much cried and moped about all day. This is going to be hard work, and I'm just so scared that this is permanent. I will be eliminating for at least a month, and then trying to add them back, one by one.

What do you all think? Should I be worried about Celiac, or is it possible to just have all these allergies totally unrelated to Celiac?

The blood test you had done checks for delayed allergies--or food sensitivites. It is not used to diagnose Celiac.

If you want to be tested specifically for Celiac, you would need the following blood tests--they are known as the Celiac Panel--

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

For this test to be accurate, you need to be eating gluten right up until the testing. Do not continue to eat gluten-free if you want to be tested for Celiac--doing this will skew the results.

If after the testing you feel you want to try the gluten-free diet, by all means do so :)

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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • 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 
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