What would a diagnosis tell me?

[xxnonamexx]

If I feel better after eliminating gluten from my diet I am curious if I get diagnosed via blood test what would that tell me differently besides avoiding gluten? Also if I had to do an Endoscopy and took biopsy how would that help me besides to tell me avoid gluten strictly? Also I read about finding a dietician but again what would they tell me differently besides avoid gluten? Thanks I am new to this and not diagnosed officially yet but trying to get a better understanding. I read so much about gluten staying in your body for weeks, years after you eat it etc. Makes me afraid to go out to eat for dinner to avoid cross contamination or travel or if I avoid gluten and all of a sudden get sick b/c gluten was in my body months earlier.

[knitty kitty]

Welcome to the forum!

A blood test for Celiac looks for the amount of antibodies your body is producing in response to gluten.  An endoscopy looks at the damage done by the antibodies attacking the villi lining the intestines.  

When you have a cold or infection, antibodies are made that attack the foreign invader.  In Celiac Disease, our immune system recognizes gluten as a foreign invader and launches antibodies against it.  However, the gluten particles resembles the same structural components in our body cells.  As a result, the anti gluten antibodies attack our own cells, causing damage like flattening villi in the intestines and also potentially attacking vital organs like the thyroid, the pancreas, the brain, and the heart.  

Gluten itself does not stay in the body for years.  The anti gluten antibodies stay in the body for years.  Our bodies remember gluten and continue making antibodies against gluten which continue to damage our bodies for years.  Eventually, if not triggered by gluten ingestion for two years or longer, our bodies may go into remission and stop producing the antibodies and thus end the inflammation and damage.

You should be afraid.  You should be very afraid.  Consuming gluten accidentally or intentionally can start the while cycle over again from the beginning.  And getting to that state of remission again can take years.  

A dietician or a nutritionist can advise you on how to start and sustain a gluten free diet while meeting your nutritional requirements.  We need essential vitamins and minerals to heal and maintain our health.  The gluten free diet can be lacking in essential nutrients unless we eat mindfully.  A nutritionist can teach us which foods will help us meet our nutritional requirements, and help us correct nutritional deficiencies with vitamin and mineral supplements.  

[xxnonamexx]

Thanks so the blood test will tell if I need to take endoscopy to check damage done? The villi grows back over time. I am on elimination diet and don't feel like eating gluten for 6 weeks to take the blood test since I have vacations planned with my family and would love to feel good for the summer then after I will go for it. Eating 10g of gluten for 6 weeks I know I will have the running to bathroom moments again and cant probably deal with it easier during that time frame. I didn't realize cross contamination and have been really watching. Since I wnet for physical my blood was fine as far as vitamins etc. So I think I don't have malabsorption of nutrients vitamins.  I have been taking a protein shake from Revive for years to increase protein, fiber vitamins nutrient intake so I feel that has been helping. Thanks for the insight. Do you feel different when taking gluten-free cross contaminated? I have read about some items claim gluten free but may bother you when out at restaurants especially so I am trying to see if I encounter a cross contamination or a gluten product that said gluten-free. Thanks

[knitty kitty]

Ten grams of gluten per day for two weeks or longer is needed to get antibody levels up high enough so that they can be measured in the blood stream and intestinal damage can be seen in the small intestines.  

HOWEVER,  only THREE grams if gluten is needed to produce symptoms...like running to the bathroom.   Some people have much worse symptoms after reintroducing gluten, even with amounts of gluten much less than three grams.  So...getting glutened or cross contamination is a real concern.   You'll be playing Russian Roulette on your vacation.  

If you got vitamin levels tested while taking a nutritional shake with vitamins, you've simply measured the vitamins from the shake.  You need to be off vitamin supplementation for eight weeks prior to vitamin testing.  Were more than Vitamin D and B12 tested???  "Normal" levels of these two vitamins don't mean that you're not deficient in the other eleven essential vitamins.  Vitamin D and B12 can be stored in the body a lot longer than the other vitamins, especially the other B vitamins like thiamine.

Enjoy your vacation!

 

 

[xxnonamexx]

Yes that's why I'm holding off on getting tested until after the summer so no Russian roulette bathroom escapades then I will reintroduce and get tested. The vitamins aren't a supplement they are frozen fruits and vegetables that you blend with water so it's natural fruit and veggies that I have used for 5 years daily. I don't take supplements I did full vitamin bloodwork and all great levels for what I need.

[knitty kitty]

Blood tests for vitamin deficiencies are not an accurate measurement of vitamin stores within cells where the vitamins are actually utilized.  The brain will order cells in tissues and organs to put their stored vitamins into the blood stream to supply the brain and heart.  Deficiency symptoms can appear before there's a change in blood levels.  

The eight B vitamins are water soluble.  That means they can get flushed out of your system easily with that Russian Roulette Running.  Some vitamin deficiencies have gastrointestinal symptoms that mimic Celiac Disease.  Thiamine deficiency has gastrointestinal symptoms including diarrhea.  Vitamin C is also water soluble with gastrointestinal symptoms like diarrhea when deficient.  Symptoms of a deficiency in Niacin B3 include diarrhea, and a blistering reaction to sunlight. 

Have a nice vacation and keep us posted on your progress when you get back!

P.S. There's not a difference between being glutened and being cross contaminated.  You'll get your usual symptoms.  The digestive tract has a limited vocabulary.  

Edited May 3, 2025 by knitty kitty
Added Post Script

[xxnonamexx]

Do you think a multi vitamin would be helpful! Also do symptoms got differently for everyone in regards to running to bathroom? I noticed regular oatmeal sometimes after eating or 1-2 hrs later I gotta go but on gluten-free no urgency. Sometimes I would eat 2 slices whole wheat and no issues for a few days so hard to pinpoint when it hits 

[xxnonamexx]

You also mentioned eating 10g of gluten for 2 weeks are longer do you think less then 6 weeks is ok? I heard 2 weeks gives false positives what about 4  weeks 10g whole wheat a day? I read 4 slices whole wheat equals to 10g gluten. Would eating 4 slices whole wheat bread a day along with elimination of other gluten suffice? Also do you recommend taking a multivitamin to play it safe or when I take the test ask for full vtamin blood test to see all vitamin levels and whatever im low in take that vitamin? Thanks

[xxnonamexx]

My doctor stated 4 slices of whole wheat bread for 4 weeks then take the blood work to diagnose. So I guess this is what I have to look forward to in the fall not to ruin summer plans with my family. I'm still confused on what the diagnose would tell me from the blood work. If it says Im gluten sensitive then I already know that from elimination diet and that won't help but how will the blood show vitamins I'm deficient in compared to my yearly physical blood work for vitamin results? Sorry I just get confused on what the blood results will tell me. If it's just to confirm gluten sensitivity then what good will that be as I've already eliminated gluten from my diet. Wouldn't adding gotten for 4 weeks just to confirm cause damage.

[knitty kitty]

Yes, everyone reacts with their own individual set of reactions.  

I think a B Complex along with a multivitamin helpful, yes.  Do not take vitamin supplements for at least eight weeks before a test for vitamin levels. Otherwise the vitamin supplements will show up in the blood tests as normal or high levels, masking any deficiencies you might actually have.  

Keep in mind that different gluten containing breads may contain different amounts of glutened.  It's better to eat more than ten grams of gluten per day to ensure you get accurate test results.  Eat all your gluten containing favorites as a last farewell.

The blood test for Celiac Disease looks for antibodies against gluten.  You have to eat gluten in order to produce the antibodies.  You have to eat sufficient amounts of gluten for a long enough time to get the antibodies to show up in the blood stream.  

If you have anti gluten antibodies, you have Celiac Disease.  If you do NOT have anti gluten antibodies, you may only have Non Celiac Gluten Sensitivity.  However some people with Celiac Disease are seronegative, meaning they don't have anti gluten antibodies in blood tests.  So to double check, an endoscopy with biopsy is done.  If there is damage to the intestines, you probably have Celiac Disease.  If there's no damage, you probably have NCGS.  

Celiac Disease is an autoimmune disease.  Other autoimmune diseases are known to coincide with Celiac Disease like Diabetes, and other health problems.  It's worth going through all the testing so you know how to take care of yourself.

Edited May 5, 2025 by knitty kitty
Typo correction

[xxnonamexx]

Thanks for the well thought out answer. I was wondering if I needed to take multi vitamins as I'm on elimination diet for the summer until I delve into blood test. It appears 8 weeks before would be 2 months before my blood test. I will see when I schedule. I agree my final gluten farewell I don't want to over indulge either during as I have to work and didn't want to disrupt my daily life until the test. Thanks for the explanation on antibody's now I understand more. I wish I was able to plan out the test but I'll wait until after the summer not to ruin family vacations. Thanks

[xxnonamexx]

I have read GliadinX is helpful have you taken that when concerned of cross contamination eating out etc? I hope the 4 weeks I gluten myself for this test I can handle my daily lifestyle without major issues.

[knitty kitty]

No, I haven't tried Gliadin X, although @Scott Adams might be able to discuss his experiences.  

I think it's a bad idea to take GliadinX during your gluten challenge.  You won't mount a strong enough autoimmune response.  

[xxnonamexx]

He said it helped him which is why I was curious if you took it. I agree not for the challenge.

[Scott Adams]

Everyone with celiac disease needs to make their own lifestyle choices--in my case I continue to eat out at restaurants and travel--while some people with celiac disease try to avoid doing either. Of course the safest way to go would be to do neither--but I cannot not accept such lifestyle changes. Since I've made my choice I try to make my dining out as safe as possible, and from what I've learned AN-PEP enzymes may mitigate low amounts of contamination. This isn't a perfect solution, but there are many people out there like me who make even worse choices (our last poll showed that over 20% of celiacs regularly cheat on their diets!).