Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Positive Blood Tests - Can I go gluten-free before Endoscopy?

taylorerin

Recommended Posts

taylorerin Newbie
taylorerin
Posted

So, my brother got diagnosed with Celiac via endoscopy and blood test a few weeks ago and they recommended the whole family get tested. My blood results came back positive: 99 on tTG and 26.2 on Deamidated Gliadin IgG. I cut out gluten immediately after I got my results back until I went to my doctor 4 days later for the follow-up and he said that positive blood tests don't mean that I have Celiac disease, just that I have the antibodies, which means genetically I have the potential to get Celiac disease. Which didn't really make sense to me. Why would my body produce the antibodies if I didn't have an autoimmune response to Gluten??? 

But for those 4 days, I felt better than ever. My skin started to clear up (I've always had bad acne that I could never get rid of with creams or even prescribed topicals), I felt I had more energy than usual, and every time I ate something I kept waiting for something to happen, and NOTHING! I can often hear my body digesting, and I get bloated and really gassy after a lot of meals. I used to think I was lactose intolerant, because most of the discomfort was after cheesy meals... but now that I think about it, all of those meals have a lot of gluten too!! Pizza, pasta (always topped with cheese or a cream sauce of some sort), cheese sandwich, cake with cream cheese frosting, etc. And I've always just dealt with it and thought the bloating was just normal, to be honest. And even if I was lactose intolerant, I wouldn't give up cheese, because like... do you know how good cheese is!?!?! PLUS I've also had unexplained knee pain since high school (I'm 23 now), and have had iron anemia in the past (which I always chalked up to being a pescetarian and not getting enough iron in my diet). My ferritin levels are up in the 60s now (a year ago they were at 12), and that's with taking a double dose of Ferrous Gulconate on a daily basis for the past year... I would have expected them to be a little higher.

SO, all of that plus the fact that my brother already has his diagnoses has convinced me that I definitely have Celiac disease. I have a referral to get an endoscopy, but they haven't called me to make the appointment yet. The doctor told me to keep eating gluten until the endoscopy so that "any signs of inflammation would still be there." From the research I've done, any damage done by Celiac disease would take much more than a few weeks to disappear. 

Anyway, I listened to him and ate something with gluten yesterday for lunch and within an hour I had a headache and felt bloated and exhausted. I had to take a nap. And when I woke up I had new pimples on my face! 

I want to stop eating Gluten, but I want the endoscopy to be completely accurate so that I can get my official diagnoses. I really want to cut out as much gluten as possible while not risking getting negative results. 

Any suggestions? 

 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Jmg Mentor
Jmg
Posted
1 hour ago, taylorerin said:

I want to stop eating Gluten, but I want the endoscopy to be completely accurate so that I can get my official diagnoses. I really want to cut out as much gluten as possible while not risking getting negative results. 

Hi and welcome :)

You sound like you've found your issue and I understand you can't wait to cut gluten, but you do need to be eating it for an accurate diagnosis. It's a lot easier to stay on it now than go back on it after a gap, a 'gluten challenge'. When you get your referraal for the endoscopy you can call the clinic and ask them if they can let you know if there's a cancellation so you can get in there sooner. Alternatively you could go off gluten until a couple of weeks before your test, but at that point you are maybe risking an inaccurate diagnosis...

Feeneyja Collaborator
Feeneyja
Posted

A gluten challenge is terrible.  I'm on week 4 of a 6-12 week gluten challenge and I want to just cry most days.  You may not get the health care and screening you need without an official celiac diagnosis.  I know it's aweful to go back to gluten now, but you are very close to being done.  

Ennis-TX Grand Master
Ennis-TX
Posted

You have to be eating it at for at least 2 weeks prior to the endoscope. But getting off it then back on it later is MUCH worse.

PS on the lactose issues....I know it is a issue, I have been lactose intolerant for 10+ years. But there are a TON of alternatives. I use Dairy Free cheese from several companies (each has strong and weak points and areas they will work with other they fail) in almost every meal, I make my own cheesy bread rolls, cheddar biscuits, and cheese sauces I glob on everything all gluten and dairy free. I even found Dairy Free Cheese extracts.....like a extract you can put in sauces, soups, omelettes, etc. and make them taste like various cheese types. Stuff is amazing in romano, paremsan, and mozzarella in pasta sauces, or some cheddar in a salsa or taco sauce, blue cheese in a spinach soup with creamy base from coconut, cashew, or almond milk. The Brie works in just about anything. I love the cheddar extract in a broccoli soup in coconut milk and a bit of curry paste and turkey bacon. I make yogurt dips with coconut yogurt, I make my own dairy free and sugar free icecream.....I eat about 6L  of it a week blending it with coconut yogurt and protein powders in smoothies for quick easy meals. I make my own seasonings also for all kinds of cheesy flavors...I recreated doritos nacho cheese powder, cooler ranch powder, and made a chili and cheese powder that taste like the stuff on fritos.....you can imagine all teh stuff you can put these on >.> I go crazy them them on eggs, and veggies, even done a soup with them lol.

BUT you do need to get off actual dairy for a bit, the tip of the villi in your intestines are what produce the enzymes to break down dairy, and they are normally damaged and is why most celiacs develop lactose intolerance. You can reintroduce it in a few months and see how you fair but the first few to boost your healing faster you should probably give it up for a bit.

DF cheeses brand,

Daiya, shreds work melted in meals, breads, and cooking but taste like crap raw, the slices are great in everything and I love the smoked gouda and jalapeno havarti blocks

Follow your Heart, Do not melt all that good, but have decent flavor

Lisanatti, Shreds are PERFECT raw or melted, the blocks tend to smear and are quite useless with bad texture.

Julian Bakery, best for melting and using in recipes like my cheesy bread, the high coconut oil content and perfect starch emulsifier ratio cause it to melt and set up just perfect.

There are many others but these are my favorites and points on them.

Gemini Experienced
Gemini
Posted

With the blood results that you have, you most likely have Celiac Disease. It's shame that the doctor failed to do a complete Celiac panel because if they had run the EMA along with it, and it was positive, that's a slam dunk for Celiac, from a blood test point of view.  When both tTg and EMA are positive, I think the percentages are 99% likely for Celiac. Then you have a brother with a diagnosis so that adds to the list of things that make it really probable.

You are correct in that you would not have antibodies without active Celiac but lots of docs say dumb things.....we are used to that. FYI....I had a completely positive Celiac panel and it was positive on all tests by over 10x the normal limit so that was my diagnosis. I refused the biopsy because I was too sick to have one.  No doctor has ever refused me testing because I did not have a biopsy.  In fact, I think they pretty much do too much testing so I make the decisions on what I have repeated or done.

If you want to go ahead with the biopsy to see how much damage there is, then just keep it to one slice of bread per day until that happens.  That is all you should need to eat.  If you have enough damage, it isn't going to heal fast enough before they do the biopsy so that should get you there.  Good luck and be happy that it was caught in time because undiagnosed Celiac makes it probable you would end up with more than 1 autoimmune disease!

Feeneyja Collaborator
Feeneyja
Posted

I'm actually thinking of insurance and approval of tests such as bone density. With a celiac diagnosis, they have to approve it even if you are "too young" to qualify for it.  That's the one that comes to mind.  

taylorerin Newbie
taylorerin
Posted
  • Author

Thanks everyone! I've just been called and I have my appointment set for June 14th. Unluckily, that happens to be my birthday, but I want to get it over with as soon as possible! I could have gotten it done on Thursday or Monday but I'd have no one to drive me home those days, unfortunately. 

So only a week left of eating gluten! I'm probably just gonna stuff my face with all of my favourite foods that I won't be able to eat after! And try to finish off all of my "fake meat" vegetarian stuff that's not gluten-free. But I'm still gonna have real, not gluten-free cake on my birthday because it'll be the last time I can have it. ?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Gemini Experienced
Gemini
Posted
1 hour ago, Feeneyja said:

I'm actually thinking of insurance and approval of tests such as bone density. With a celiac diagnosis, they have to approve it even if you are "too young" to qualify for it.  That's the one that comes to mind.  

I guess it depends on what you have for insurance.  I have a group plan through my employer and they approve everything that a doctor orders......  except for testing that is not mainstream. They also should "approve" bone density testing in petite, small boned women with or without Celiac. There are many other risk factors involved in having compromised bone density.

Gemini Experienced
Gemini
Posted
44 minutes ago, taylorerin said:

Thanks everyone! I've just been called and I have my appointment set for June 14th. Unluckily, that happens to be my birthday, but I want to get it over with as soon as possible! I could have gotten it done on Thursday or Monday but I'd have no one to drive me home those days, unfortunately. 

So only a week left of eating gluten! I'm probably just gonna stuff my face with all of my favourite foods that I won't be able to eat after! And try to finish off all of my "fake meat" vegetarian stuff that's not gluten-free. But I'm still gonna have real, not gluten-free cake on my birthday because it'll be the last time I can have it. ?

Have fun eating your heart out and Happy Birthday!  :)

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    2. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    3. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    4. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Son's legs shaking

      @lizzie42, You're being a good mom, seeking answers for your son. Cheers! Subclinical thiamine deficiency commonly occurs with anemia. An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal. Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps...
    5. Scott Adams
      - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748
    MaryannHall
    Newest Member
    MaryannHall
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Bob red mill gluten free oats

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.