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?wrong Test For Celiac Disease

poopedout

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poopedout Apprentice
poopedout
Posted

I started having diarrhea mainly at night - watery, 6 or 7x a night - in October or November. At the end of December I thought it was likely that it was gluten intolerance so I started a gluten free diet then. After two weeks there were signs of improvement. After two months (end of February) there was noticable improvement and the diarrhea stopped. This lasted for one month and by the end of March the diarrhea came back. It is again mainly at night usually starting around midnight.

I saw my GP about this for the first time at the end of April. He ordered routine blood tests, nothing specific for celiac disease. I don't know the results. He also ordered a CT colonogram which I have to have before seeing a GI specialist.

I think the colonogram is not what I should have first and I am worried about the bowel prep for it as I have already lost 12% of my body weight and am still losing. The test is scheduled for June 1st. It seems the test is to rule out colon cancer. I would prefer to see a GI Specialist first before having the colonogram.

Should I cancel the colonogram and wait to see the specialist? This is Canada so the wait time could be six months? I don't know how much longer I can continue to have diarrhea and have most of my food go down the drain before I get really sick.

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WheatChef Apprentice
WheatChef
Posted

The CT scan will not test for celiacs, but you don't know that is all that is wrong with you.

nora-n Rookie
nora-n
Posted

You need a biopsy of the small bowel, and starting from the top, to check for celiac. Not from teh bottom.

And, it will be negative if you are gluten free.

You can buy a home test to test for TTg in Canada, and it is probably at least as sensitive as the hospital blood test. But, it will only be positive if you eat at least 0,3-0,5 grams gluten per kg weight.

You should get the tests for free from the national health service.

I suggested the ttg home test so you have some kind of argument to present....but of course blood test negative celiac does excist.

poopedout Apprentice
poopedout
Posted
  • Author

You need a biopsy of the small bowel, and starting from the top, to check for celiac. Not from teh bottom.

And, it will be negative if you are gluten free.

You can buy a home test to test for TTg in Canada, and it is probably at least as sensitive as the hospital blood test. But, it will only be positive if you eat at least 0,3-0,5 grams gluten per kg weight.

You should get the tests for free from the national health service.

I suggested the ttg home test so you have some kind of argument to present....but of course blood test negative celiac does excist.

I did the home test but I was not able to get the blood to come out of the cannula into the solution so it did not work. They did not say anything about eating gluten before the test.

Essentially I am up the creek because I have been gluten free for more than four months so none of the tests are of any use. I could not go back to eating gluten again for four months so that I could have the tests because I could not tolerate the horrible diarrhea again. The only reason to do an endoscopy now is to see if I have permanent damage to my villi. I think my only option is to continue on the gluten free diet and to assume that it is gluten intolerance or celiac if I get better again. Any other suggestions?

nora-n Rookie
nora-n
Posted

the home ttg test and the hospital ttg test only work if you still eta gltuen, and a lot of gluten. It dose say so somewhere.

The gene test does not rely on gluten.

you can have he gene test through your doctor, or order it from Enterolab in teh U.S. privately.

Enterolab also can detect gluten antibodies up to a year after going gluten free. They cannot diagnose celiac, only gluten sensitivity since their tests are for too sensitive.

Also, they test for antibodies to casein or other things, which can cause just as severe symptoms as gluten.

GFinDC Veteran
GFinDC
Posted

Since you are already gluten free, there isn't much point in any tests for celiac except the Enterolabs tests. Have you tried finding any other possible food intolerances? Dairy, soy, nightshades, food colorings, preservatives, yeast? There are all kinds of possible food gotchas out there that can make you sick.

poopedout Apprentice
poopedout
Posted
  • Author

the home ttg test and the hospital ttg test only work if you still eta gltuen, and a lot of gluten. It dose say so somewhere.

The gene test does not rely on gluten.

you can have he gene test through your doctor, or order it from Enterolab in teh U.S. privately.

Enterolab also can detect gluten antibodies up to a year after going gluten free. They cannot diagnose celiac, only gluten sensitivity since their tests are for too sensitive.

Also, they test for antibodies to casein or other things, which can cause just as severe symptoms as gluten.

Thanks for the advice. I went to the Enterolab website and they recommend the Gluten Sensitivity and Gene Panel Complete. The cost is $349.00 U.S. I don't think I can get the genetic testing done here as probably the health service will not do the tests, not even if I want to pay for them. I am beginning to wonder if there is any point in getting a definitive diagnosis. Probably what I will do is have the colonogram to rule out cancer, see what the GI specialist says, not have an endoscopy, and continue on the gluten free diet. If I can get the genetic testing done here, I will. If not, I will have just the genetic testing done by Enterolab.

When I first went to the doctor at the end of April, I did not know that most of the tests would be useless because I have been on a gluten free diet for four months. Thanks to this site I am much more knowledgeable now. I am wondering if the GI Specialist will be as knowledgeable. I think I am starting to improve again very slowly so the gluten free diet is probably the answer.

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poopedout Apprentice
poopedout
Posted
  • Author

Since you are already gluten free, there isn't much point in any tests for celiac except the Enterolabs tests. Have you tried finding any other possible food intolerances? Dairy, soy, nightshades, food colorings, preservatives, yeast? There are all kinds of possible food gotchas out there that can make you sick.

I am thinking that also - that there is no point in having the tests. As for other food intolerances, I don't think so. This is all so weird for me as I have never been really sick before. I never go to the doctor, I am not on any medications, and I am 69 years old. I have read that gluten intolerance can appear even at my age. I would think that all of the other ones would have reared their ugly heads before this.

sb2178 Enthusiast
sb2178
Posted

Make sure they are taking biopsies to check for Crohn's/colitis while they do the colonoscopy -- they would need to be eliminated as problems. Maybe you can see if they will do an endoscopy with biopsies at the same time so you only have to undergo the sedation once.

Good luck.

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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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      @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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      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
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      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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