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Would You Call This Celiac?

delicatefade

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delicatefade Newbie
delicatefade
Posted

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
YoloGx
Posted

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
delicatefade
Posted
  • Author

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
Ursa Major
Posted

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
delicatefade
Posted
  • Author

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

neesee Apprentice
neesee
Posted

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
YoloGx
Posted

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
jerseyangel
Posted
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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    • cristiana
      Feel like I’m starting over

      By cristiana · Posted

      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
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      By knitty kitty · Posted

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
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      By Wheatwacked · Posted

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
      My only proof

      By NanceK · Posted

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
      Feel like I’m starting over

      By Wheatwacked · Posted

      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
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