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 Test, Negative Biopsy, But Vomit When I Eat Wheat Products


Jeffiner

Recommended Posts

Jeffiner Apprentice

This is going on seven years. I vomit on nearly a daily basis. My IgA level was slightly positive but my biopsy was negative. I have been eating gluten free and have not been vomiting. Today, I had two regular cookies and literally tossed them. I have an appt with an allergist next month to see if it is an allergy. Occasionally without gluten in my diet, I will vomit. It is not reflux. I get terribly nauseous and light headed ten minutes after eating, then throw up up to an hour later. I have even experienced shortness of breath, which makes me think allergy.......maybe? IDK I can't eat it, bottom line. I would like to know if it is an allergy or if it still could be celiac disease because the effects are different. My intestines were okay but I had a nasty looking esophagus. Thanks for any input.


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



Celiac.com Sponsor (A8-M):



sb2178 Enthusiast

This is going on seven years. I vomit on nearly a daily basis. My IgA level was slightly positive but my biopsy was negative. I have been eating gluten free and have not been vomiting. Today, I had two regular cookies and literally tossed them. I have an appt with an allergist next month to see if it is an allergy. Occasionally without gluten in my diet, I will vomit. It is not reflux. I get terribly nauseous and light headed ten minutes after eating, then throw up up to an hour later. I have even experienced shortness of breath, which makes me think allergy.......maybe? IDK I can't eat it, bottom line. I would like to know if it is an allergy or if it still could be celiac disease because the effects are different. My intestines were okay but I had a nasty looking esophagus. Thanks for any input.

Sounds more like an allergy, but celiac shows up in many varied ways... are you avoiding rye, barley, oats too? Do they make you sick? If they don't, it's less likely to be celiac.

skigirlchar Newbie

i had gone gluten-free and then had to "add it in" for both the blood work & the biopsy

i came up negative on both tests but i have the same vomit issue that you do. (example - last night i had something made by someone else.... i woke up in the middle of the night vomiting.)

some of the items i do have positive allergy test results for

some i don't

i have since gone gluten-free/CF/SF and while it's difficult, i find it's worth it to feel human again

good luck and you know you have support here

nora-n Rookie

Hi, what do you mean by "IgA level slightly positive"?

was it the total IgA, or the ttg IgA, or the antigliadin IgA?

Have you heard about ee, eosinophilic esophagus? This is food allergy related. There are several postings about ee here, and it is somewhat related to celiac in as that some have both.

If you surf on www.thefooddoc.com 's blog, there is an article about ee there too. And about early celiac where the tests are not high yet.

Jeffiner Apprentice

Thank you that have replied for the information and support. I had a Transglutimnase IgA Autoantibodies of 4.5. A weak positive is 4-10. All the other numbers were normal.

mommida Enthusiast

Going back to your scope on the esophagus, what type of damage was happening there? Did you have any biopsies taken from the esophagus? Do you have a copy of that report? Do you have pictures?

Eosinophilic Esophagitis was only given a standardized medical code in October of 2008 (if I remember right). Doctors might not be fully aware of all of the eosinophillic disorders that can occur anywhere thoughout the GI tract. Some cases of GERD might be misdiagnosed. If the doctor does not order the biopsy to be examined for Eoisinophils the pathologist will not give the eosinophil count. ( Adult diagnoses will depend on the range of the count)

Damage in the esophagus from EE would be active eosinophils. Eosinophils are the nastiest white blood cells the body makes. The cells have a spearlike projection to attack foreign bodies (mostly parasitic infection) but the cells don't know how to tell the difference from it's own bodies tissue. The cells cause damage to anything it comes in contact with.

The E's are sometimes visible with the scope, but normal looking tissues need to be biopsied as the E's can be imbedded into the tissue. Furrows can be seen in the esophagus and can cause food to get stuck.

Since there really isn't much to support valid medications for treatment, it is best to avoid any triggers. Allergy testing may help an individual learn what to avoid, but most cases allergy testing reveals nothing. The trigger may be food or airborn and possibly seasonal.

Vomitting on a daily basis is definately a symptom.

Jeffiner Apprentice

Going back to your scope on the esophagus, what type of damage was happening there? Did you have any biopsies taken from the esophagus? Do you have a copy of that report? Do you have pictures?

Eosinophilic Esophagitis was only given a standardized medical code in October of 2008 (if I remember right). Doctors might not be fully aware of all of the eosinophillic disorders that can occur anywhere thoughout the GI tract. Some cases of GERD might be misdiagnosed. If the doctor does not order the biopsy to be examined for Eoisinophils the pathologist will not give the eosinophil count. ( Adult diagnoses will depend on the range of the count)

Damage in the esophagus from EE would be active eosinophils. Eosinophils are the nastiest white blood cells the body makes. The cells have a spearlike projection to attack foreign bodies (mostly parasitic infection) but the cells don't know how to tell the difference from it's own bodies tissue. The cells cause damage to anything it comes in contact with.

The E's are sometimes visible with the scope, but normal looking tissues need to be biopsied as the E's can be imbedded into the tissue. Furrows can be seen in the esophagus and can cause food to get stuck.

Since there really isn't much to support valid medications for treatment, it is best to avoid any triggers. Allergy testing may help an individual learn what to avoid, but most cases allergy testing reveals nothing. The trigger may be food or airborn and possibly seasonal.

Vomitting on a daily basis is definately a symptom.

All the doctor said was that I had esophagitis from vomiting so much. I have the picture but there was no biopsy taken from it.

l_99a5cb47045c49b0abd19b1fe51352a3.webp


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



Celiac.com Sponsor (A8-M):



mommida Enthusiast

The esophagus definately has the furrows (the grooves). There is some of cream colored pus stuff in the furrows.

The doudendom (sorry can't spelll today) has the creamy speckled look.

Talk to your doctor about the possibility of Eosinophils. (The name of eosinophils is because of the cells absorbtion of red dye.)

My daughter was vommitting up to 5 times a day. Were you given a steroid puffer to help heal?

nora-n Rookie

Unless you have giardiosis or some kind of liver disease or diabetes 1, shich might give a false positive on the ttg test, the positive ttg test does mean something.

How many biopsies did they take from the duodenum?

Some places they have started to take at least 12-15, because celiac is typically patchy (something they have only been aware of for a few years) and it is easy to miss the celiac patches.

With the standard 4 they would mostly find very advanced celiac.

Also, some people only have the celiac lesions on the wrong end, and they find that with a pill cam.

The pill cam will even show such good images of the villi that they can see if the villi are blunted=celiac.

Some pathologists are just lousy at diagnosing celiac. You might have a positive biopsy, but the pathologist thought one needeed total loss of villi and did not count the IEL's (special staining technique needed for that) and increased IEL's means celiac. But that is new too.

Yes, they should have biopsied the esophagus to check for ee.

Archived

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

  • 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 replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      Supplements for those Diagnosed with Celiac Disease

    2. - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      Insomnia help

    5. - SilkieFairy replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,354
    • Most Online (within 30 mins)
      7,748

    Gracieruizzz
    Newest Member
    Gracieruizzz
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
    • cristiana
      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep.  One of my relatives is an insomniac and I am sure that is part of the problem.  Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read, do a sudoku or some other small task, and then go back to bed when she felt sleepy again.  I can't think it did her any harm - she lived  well into her nineties. Last week I decided to try a Floradix Magnesium supplement which seems to be helping me to sleep better.  It is a liquid magnesium supplement, so easy to take.  It is gluten free (unlike the Floradix iron supplement).  Might be worth a try.        
    • SilkieFairy
      It could be a fructan intolerance? How do you do with dates?  https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
×
×
  • 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.