• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Something Other Than Celiac Disease
0

Rate this topic

7 posts in this topic

Recommended Posts

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?

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.

Share this post


Link to post
Share on other sites

"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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites
Ads by Google:


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.

Share this post


Link to post
Share on other sites


Ads by Google:


Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,157
    • Total Posts
      939,977
  • Member Statistics

    • Total Members
      66,141
    • Most Online
      3,093

    Newest Member
    Victoria Zoey
    Joined
  • Popular Now

  • Topics

  • Posts

    • Noticing I am having D quite easy nothing bad, painful or gassy, just D or super soft stool in the mornings for the past 4 days. Food Diary suggest several culprits, my BBQ jackfruit seems to be the number one suspect, This is my BBQ cuisine week or two and I can not eat meat so I have a big wad pinch of shredded homemade BBQ Jackfruit. I have done a gluten test on it and that is not the reason but perhaps the seasonings or perhaps hte cider vinegar I put it in fermented it a bit?

      Other thoughts on culprits, I have upped my vitamin C intake to about 1500mg a day spaced out in 2 doses Vitamin C has been linked to D in many cases and is one reason why some people get D when they take a vit C supplement in conjunction with fruit.
      I have also upped my cocoa nib intake this could be a culprit also,
      I have cut back on binding seeds like flax, whole shell pumpkin, and chia which used to be a huge fiber supplement so this could be the cause of more softer stools.Next week I start back on chia seeds in my eggs and we shall see if my stools firm back up. 
      I also doubled up on probiotics as I was taking half the recommended dose prior.
      Eating a bunch more cinnamon, and cinnamon oil, but I do this on rotation so doubt it,
      My new low carb bread, I am eating 2-4 slices of this grain less bread a meal now. This could be it but this bread using coconut flour in it, and egg whites. I doubt this is the case, as coconut flour is known to absorb liquid a lot, and tends to firm up ones stool and in fact cause constipation in people if they do not consume it with a lot of liquid. I came across health concerns with other bakers when I was working on this recipe about it.
      My protein intake went up to double what it used to be 5 weeks ago, doubt this is the issue but this week, I changed it using a custom blend with MUCH less rice protein and more pea and sancha inchi. I noticed the more rice protein I consumed the worse my edema got with legs and feet swelling. Have this well under control now with no swelling,
      I considered it perhaps my extreme coffee intake but I have changed to only 2 cups of caffeinated coffee a day starting mid last month. Down from a whole pot.......so now I drink about a pot of decaf a day. I doubt this is it as it never gave me a issue with the much more likely culprit of full on caffeinated in the same amount.

      While I try to trouble shoot it I am actually slightly enjoying it. Odd as this might sound, I spent most my life with chronic constipation, and the only relieve I used to get came with a glutening and that had EXTREME pain and gas. Followed by a week or so of constipation so bad I had to take laxatives.  This....this is just a release with no pain or gas....odd and creepy but I seem to have much more energy, and I can eat and drink a lot more. >.< I think I might enjoy this ride a bit of regularity even if it is a bit off, it is a huge change from my hard stools and painful movements of years past.  I mean I have gone as far in the past as taking a entire bottle of miralax to try to go and just had gassy normal BM 24 hours later and frankly miralax makes me feel like groggy, tired, and like the blob, I am that guy that had to double the dose of everything for the scope prep and had the doctor think I cheated when I told him the first time I did it right and did not clean me out. I want to find out what is triggering this and add it to my regime for clean out or laxative treatment after a glutening next time when that C hits for a week.
    • Yeah noticing some others, black tea, gives me that film/mucus on top of my stomach while green tea, herbal/hibisicus, and coffee do not. I have recently fell in love with Rythem Kale chips, and roasted kale. Kale raw...I always get sick from. At first it was due to the waxy stuff on the ones I was getting, then I got organic washed. and still got the issue minus the floating waxy stuff in my stomach. Now if I stewed it, nuked it, or made chips out of it no issues. But with the farmer market, me baking for it, and Texas Summer preventing afternoon baking due to heat. I never had time to roast kale this summer. Now with the Rythem Kale it comes prepared in a way that doe not make me sick. Love using it crushed up in my omelettes, or using it crushed as a garnish over my miracle noodles or rice. with a pesto or butter flavored coconut oil. Considered this, I have a friend who has this with bananas and a few other fruits, they do not bother him if he cooks them, raw causes hives and swelling. Again I considered it but I no not have sores form in my mouth like I do with my corn allergy, nor do I get itchy or swelling. Still might be a slight issue I might  give it some more thought. >.> could be the fact I do not have much feeling for heat or pain in my mouth (nerve issues).  But it does sort of apply I need to do some research and see if others have this and might be limited to the vomiting and stomach mucus symptoms also. I might try eating some foods I know I have a allergy to like peaches and mango, just a tiny bit in a extract, and see if I get the same reaction, They normally just cause drainage, and sniffles, even stuff with just the flavoring or extract.
    • Hate to add more to your list but you may also want to look into Oral Allergy Syndrome. Mostly because how you describe almonds. Yes, it is another extensive list of foods for intolerance and allergies. 
    • How long were you fully gluten free for Kirsty?  
    • Hi Matt, So you say your hypoglycemia resolved going gluten free. In my case, it got worse trying to get off. Now my cortisol, progesterone and estrogens are low. The extreme stress from trying to cut it out of my diet offset my menstrual cycle. That leaves me with a lot of anxiety, blood sugar issues worsen at specific times of my cycle. So I want the doctor to stabilize me hormonally, as far as that goes while being on gluten. I agree that I’d have to fully stop eating gluten. Not just a bit. Even though I removed all gluten except 1,5 slices of bread, I still experience the above symptoms. Some of those symptoms might be because of the hormonal situation. But they always worsen after eating gluten. My appointment with a hormonwise doctor is in 10 days. Seems such a short time, but hate waiting. Kirsty
  • Upcoming Events