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Something Other Than Celiac Disease
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I get ill from eating gluten, milk and soy. I was tested for celiac disease and have no antibodies in my body suggesting I have that. Also I have been tested for milk intolerance and was ill at the time of testing, but no intolerance was found. My guts were tested with a camera and nothing was found there except a small part directly after my stomach was irritated because of a hiatus hernia. I don't have a bacteria in my stomach causing problems. I was tested for vitamin B12 shortage but I seem to have enough in my body for a healthy person who isn't on a diet. I do need to be on a gluten, milk and soy free diet and have vitamin B12 shot once a while. My guess would be that my body doesn't react to the allergens found in gluten, milk and soy but somewhere further in digesting it goes wrong. I also get ill when I consume Fantomalt from Nutricia which is a energy supplement for people who need more energy than a regular person does. I don't react bad to regular sugar or dextrose from grapes. Does anyone know what could cause the problem?

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Was a biopsy taken? The damage from celiac and many other intestinal issues can rarely be seen by the naked eye unless it is a bad case. What celiac tests did you get? Often doctors wont do the entire panel which is essential for proper diagnosis. Many members on this forum had issues with all sorts of foods prior to celiac diagnosis because the problem is that your intestines are damaged and not absorbing the food you eat properly so regardless what you put in it will give you problems.

Also you may have Non-celiac gluten intolerance which is much more common and would not show anything abnormal on blood tests, my suggestion would be to 1- make sure you have the entire celiac panel done and 2- try going gluten free and see if your symptoms resolve. Aside from that there are no doctors on this forum so many people on here are not well versed to give other intestinal suggestions.

This is the full panel you need to exclude celiac:

Total serum IgA- This has nothing to do with celiac however if you are low in this than all of your IgA based tests will likely be false negative

Deamidated Gliadin IgA- In IgA sufficiency this is the most accurate test on your body's response to gluten ingestion, if this is positive your body is having a negative reaction to the consumption.

Deamidated Gliadin IgA- Similar to it's IgA counterpart but particularly useful if you are IgA deficient.

Tissue Transglutaminase Ab- This is a marker of damage, if this is elevated your intestines are damaged and celiac is most likely the cause (about 95-98 percent specific to celiac)

Endomysial Ab- Another marker of damage that is extremely specific to celiac

Unless you had all that you have not had an accurate exclusion of celiac. Let me know any other questions you have.

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"Toworry" is absolutely correct. For the most part the members of this forum are not doctors. However, we all have far too much combined knowledge from years of either being dismissed by doctors or from having gone undiagnosed due to "normal" blood work.

There is one thing I can share with you. IF you know you have trouble with some foods and there are issues with B12 absorption, it is likely you have problems with other foods and POSSIBLE that your digestive system was damaged by gluten consumption. It takes time and persistence to root out the exact cause - hang in there.

It is important to confirm that your doctors have run all necessary tests with regard to Celiac Disease. It is also possible the tests that were completed were affected by the level of gluten ingestion prior to testing. Removing gluten and even eating "gluten-light" can cause a change in the antibodies measured in celiac blood work.

Hang in there...learn as much as you can...ask questions often.

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I have had a biopsy taken of my guts right after my stomach and somewhere further in my guts. The test results show that only the first part of my guts after my stomach was irritated by stomach acid because of a hiatus hernia. The biopsy showed that everything is fine.

I am on a gluten, milk and soy free diet for a few years now and because I don't eat soy often the effects of consuming soy are heavier. In the past I would avoid gluten and milk completely but now I also have to completely avoid soy. When I eat one of the three the thermoregulation of my body isn't working well so that I can't cope with warm or cold weather. Also when I eat something bad I get allergic to bee stings. When I get stung by a bee I get too much energy a few minutes and after that I am completely burned out.

The tests were done during and after I was getting on a diet. All tests that would suggest celiac disease were done before I was on a diet and two other tests that have nothing to do with gluten problems were done during my diet. My GP hasn't mentioned the possibility of being low on Total serum IgA. He has only tested me for the regular type of allergic reaction that's part of celiac disease. I was sent back home from a academic hospital because the doctor suggested that the test results were bad and I have had to live with it. My GP suggests mental help to cope with my feelings if the academic hospital doesn't want to do tests anymore.

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Ok well celiac is not an allergy so I have no idea what your doctor tested you for and it looks like he doesn't seem to know either. Please go in and demand copies of the tests and report back here, unless you have had every test I mentioned you will not receive a proper exclusion. Celiac is patchy and unless a doctor is scoping you knowing that he is looking for celiac chances are he will miss it, so the biopsy is no exclusion either unless adequate samples were taken(at least 4).

Milk and soy intolerance is insanely common with celiac until the damage has at least healed, you don't have the proper villous structure so how can your body digest anything that is already hard on the stomach to begin with?

How strict has your diet been? You can't eat a little gluten here and there with celiac, you must stop all completely. If your diet is strict did your symptoms improve after going gluten free?

Look at Lisa's signature, I bet her doctors ran "some tests" too, be vigilant about your health and don't accept "i dunno's" no longer, you have been through enough and deserve to feel good again. So please, I am urging you to go get the tests and report the results here, as Lisa said many of us have had the run around and we are here to prevent it from happening to others.

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I think a major part of your problem may be that you've been gluten-free for so long. Damage may not be present, so if you are celiac or just intolerant, neither will show physical evidence. I was gluten-free for only 2 months and I showed no signs of damage so my gastro could not conclude definitively if I'm celiac or NCGI. In the end it really doesn't matter because your solution to the problem is the same for either. I'm in the unknown like you and I just treat it like I have celiac. It's just easier to explain to others and whether it is one or the other is more a matter of semantics for me because I avoid gluten in the same manner and wouldn't change a thing if I knew it was one instead of the other.

You will also not show signs for intolerance to milk. I've been lactose intolerant my entire life and there's no physical evidence to be seen to confirm that via endoscopy. And I think in your case if you avoid gluten and soy and milk, then feel better....then you have an intolerance to all of them. Simple solution is to just continue avoidance and use enzymes to help with the milk issue if they help.

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A hiatal hernia would be at the top of the stomache....not the bottom....

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    • Here is another point.  My hubby went gluten-free per the poor advice of his GP and my allergist.  It worked.  A tough first year, but he got well.  Thirteen years later, I got diagnosed with celiac disease.  I was shocked!  😱.   Does he have celiac disease?  We will never know because we can not afford to have him do a challenge.  He refuses and I can not blame him.  He knows he will be very sick!   The point?  I am so lucky that we both can not have gluten.  I never worry about him making me sick or vice versa. We made the house completely gluten free for  1) our health and 2) the fact that our kid started helping in the kitchen. Kids make mistakes and I personally need a safe haven.  She wants gluten?  I buy prepackaged stuff and she takes it to school.  All parties and events at my house are gluten free.  Lots of work, but we stay healthy.  She does not have celiac disease.  When she is preparing for a celiac test,  I send her on the porch to eat cookies or bread or whatever floats her boat.  We travel in a gluten-free RV.  I have five sizes of ice chests.  We just have to be prepared for any event.   How can we live this way?   We love feeling good.
    • Freize is right, you need to think about your environment.   Based on that a study I posted for you, you will note that the patients who were diagnosed with refractory celiac disease and THOUGHT they were diet compliant found that they WERE NOT diet compliant.  How is this possible?   This is way out there, but unless you are growing all your own food, you don't really know if it is gluten free.  In the US, we do have laws to help protect our food supplies (no perfect, but a start).    I can not speak for India.  For example, what about your soy?  It can be contaminated by the farmer as it is often rotated with wheat.  Here is an article by Jane Anderson who has celiac disease.  She is very strict as she has DH (celiac rash), but she cites Trisha Thompson who tests foods for gluton contamination, The gluten-free WatchDog (like Consumer reports).  She found that soy which is naturally gluten free, but can be cross contaminated by wheat: https://www.verywell.com/is-soy-gluten-free-562371 so, start thinking about your food supply. As far as a negative TTG IGA or TTG IGG?  I test negative to both.  Only the DGP IGA has ever been elevated in my blood tests (even repeats), yet I had a Marsh Stage IIIIB on my biopsy.  Have you had a DGP IGG?  (I do not see this in your posting).   http://www.cureceliacdisease.org/screening/ These additonal celiac tests might help you feel confident that you have celiac disease and not something else that is damaging your villi.  But remember, some  folks have celiac disease even with negative blood.  I am not IGA deficient, so this is an area I have not researched.  Not to mention that some celiac researchers do not think that the celiac  antibodies tests are good for diet compliancy.   I wish I had better answers for you.  Try a grain free, whole foods diet of meats, fish, eggs, and vegetables for a while.  All food prepared by you. Who cooks your food now?  Is your home gluten free?  Cross contamination at home?  Kissing a loved one.  We had a doctor with celiac disease who was getting glutened by her little children who were consuming gluten!  
    • I won't say I will never eat out but I can't see me eating out for the foreseeable future. Even then, I will most likely only eat at a dedicated gluten free place. I am extremely sensitive to the tiniest amount of gluten and it's just not worth the risk to me. Eating out is playing Russian Roulette as far as I'm concerned and I'm not ready to play that game yet.
    • You are right. The weirdest part is that I feel fine, however, I am sure cross-contamination is doing damage even when we don't think it is. 
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