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Oh My Goodness...i Probably Have Celiac Too!

Kara'sMom

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Kara'sMom Explorer
Kara'sMom
Posted

I just got back from my endoscope. This is what it says:

During the procedure we found the following:

Scalloping in the third part of the duodenum compatiable with celiac sprue (they took a biopsy)

and I won't write the rest but OH MY GOODNESS. I had a negative blood test but he said that basically didn't matter.

Has anyone here had a neg blood test but a postive biopsy??? I am freaking out here. My DD has handled it wayyyyyyy better than I could.

Mary

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Joni63 Collaborator
Joni63
Posted
I just got back from my endoscope. This is what it says:

During the procedure we found the following:

Scalloping in the third part of the duodenum compatiable with celiac sprue (they took a biopsy)

and I won't write the rest but OH MY GOODNESS. I had a negative blood test but he said that basically didn't matter.

Has anyone here had a neg blood test but a postive biopsy??? I am freaking out here. My DD has handled it wayyyyyyy better than I could.

Mary

Wow. I can see where you would be surprised. Did you have any symptoms prior to testing or just get tested because your DD has it?

I have heard there is a high rate of false negatives with the blood test results.

I'm sure you will be fine. You just need time to let it sink in. At least your already past the hardest part with knowing more about gluten than most people do when first getting diagnosed. Not that I'm trying to make light of it, it's not an easy diet at all and it takes time to get used to eating and cooking differently. But after a few months it will be a lot easier. And I'm sure you will find that some symptoms you wouldn't even suspect will go away due to not eating gluten. I've had so many positive things come out of getting rid of gluten from my diet. Feeling better is well worth the small sacrifice of not eating some foods. Hang in there!

Ridgewalker Contributor
Ridgewalker
Posted

Yeah, there are lots of people here who had negative blood test/positive biopsy.

Furthermore, if you study people's signatures, you will see that the real-world occurance of 1st degree relatives that have Celiac is MUCH higher than the "studies" that have shown a 10% occurance.

In other words, I think that is one more thing the medical community needs to catch up on. Celiac is much more common in families than what they say.

(((hugs)))

cyberprof Enthusiast
cyberprof
Posted

I had a positive biopsy and a negative blood test. I think it's very common.

Mary/Kara's mom, you can do this. Actually, as an adult it may be harder (or easier) than for kids. But at least you don't have to worry about the kids at the lunch table trying to get you to trade a sandwich or friends at the dorm trying to get you to eat pizza and beer! I think I have it much easier than my 14yo son.

~Laura

Kara'sMom Explorer
Kara'sMom
Posted
  • Author
Wow. I can see where you would be surprised. Did you have any symptoms prior to testing or just get tested because your DD has it?

I have heard there is a high rate of false negatives with the blood test results.

I'm sure you will be fine. You just need time to let it sink in. At least your already past the hardest part with knowing more about gluten than most people do when first getting diagnosed. Not that I'm trying to make light of it, it's not an easy diet at all and it takes time to get used to eating and cooking differently. But after a few months it will be a lot easier. And I'm sure you will find that some symptoms you wouldn't even suspect will go away due to not eating gluten. I've had so many positive things come out of getting rid of gluten from my diet. Feeling better is well worth the small sacrifice of not eating some foods. Hang in there!

Hey..I have ZERO symptoms except for acid reflux which my entire family has and even that is mild. If I can make some good bread...I think I"ll be ok. I gotta have garlic bread with my spaghetti and I LOVE cookies and cakes..whereas DD could care less.

When I came home and told Kara that I probably have it..she's like...."it's me and you". :-)

I PRAY my son doesnt' have it as well. He has always been a MUCH better eater than Kara and would have a much harder time elminating sweets, etc....but I can't even think about that now.

I gotta go lay down for the night. I'm still tired from being knocked out and also from not eating since yesterday at 7pm. I just had a small bowl of soup b/c MAN my throat is sore and DRY.

I'll check back tomorrow. Thanks for the support. If ya'll hear a loud wail....it's me with the positive biopsy results. LOL

mary

dandelionmom Enthusiast
dandelionmom
Posted

Since my daughter's official diagnosis, I consider myself self-diagnosed. It is actually a bit easier having two of us in the house: Julia has a built-in gluten-free buddy, I feel better than I ever have, and I can eat dairy again (I've had "IBS" and have been severely lactose intolerant and anemic for YEARS). We can vent to each other about missing garlic bread. I'm pretty sure I'm going to have to learn to bake just so I can have garlic bread again. :blink:

Offthegrid Explorer
Offthegrid
Posted

I'm sure it's impossible to believe this now, but soon you won't even crave bread. In the beginning I was dying for it, or a good bagel, but now I don't even care. What I do enjoy is muffins (although haven't tried that since going soy-free) and yummy banana bread.

Breakfast was definitely the hardest meal for me. These days I usually eat fruit.

But to give you a glimpse of how much easier it gets, today I had to attend a business breakfast and watch everyone eat muffins, donuts and bagels. Didn't even bother me. I just had some orange juice and delicious grapes. yeah, sounds far-fetched to hear it now, but hang in there.

Also, gluten-free brown rice pasta is YUMMY! You won't even notice a difference. I'd avoid the corn pasta.

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EBsMom Apprentice
EBsMom
Posted

Oh, my. I know you must be shocked....freaked out....sad. At least you can be gluten-free with your dd. My dd's illness and subsequent diet change are what led first me, and then my ds, to figure out that we, also, can't do gluten. It's easier when you have company. Good luck to you!

Rhonda

cyberprof Enthusiast
cyberprof
Posted
I'm sure it's impossible to believe this now, but soon you won't even crave bread. In the beginning I was dying for it, or a good bagel, but now I don't even care. What I do enjoy is muffins (although haven't tried that since going soy-free) and yummy banana bread.

Breakfast was definitely the hardest meal for me. These days I usually eat fruit.

But to give you a glimpse of how much easier it gets, today I had to attend a business breakfast and watch everyone eat muffins, donuts and bagels. Didn't even bother me. I just had some orange juice and delicious grapes. yeah, sounds far-fetched to hear it now, but hang in there.

Same with me! I used to go to business breakfasts and be the one who went back for seconds of bagels, croissants, muffins. (Can you say "addicted"?) Now I go and get the best strawberries, grapes and melons. And go back for seconds of the fruit.

I also go to potlucks and watch other people eat and I'm not even tempted. But I do make muffins to have a quick breakfast (not every day- I freeze them and thaw as needed).

~Laura

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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
      My only proof

      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
      Related issues

      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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