• 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
0
maybe_maybenot

So Maybe I Am Gi Or Celiac? Maybe I'm Not....

Rate this topic

Recommended Posts

Greetings,

For the past few years I feel like I'm getting more and more tired. Other symptoms include frequent heartburn, headaches, inability to focus (brain fog?), frequent colds, flus, almost always stuffed up to the extent that i didn't realize i had stopped breathing from my nose completely etc. I've tried a few things to fix this, work out (made me more tired), sleep study (nothing real found not, not even sleep apnea, was given a CPAP machine anyway and it didn't really fix anything), sleep more, sleep less, diet (i've put on considerable weight as well), etc.

I also have issues with digestion, and I saw an internist (?) and after a biopsy was diagnosed with eosinophilic esophagitis. After the diagnosis of EE, I went on an elimination diet for 2 months (Was meant to go 6 but went on vacation and stopped), of dairy and wheat products. As a person who doesn't like meat (not morally opposed just never liked it) that elimination diet pretty much took out most of my food options :P. Anyway I never gave it that much thought because even though when food got stuck in my esophogus, it was quite uncomfortable, it happened infrequently enough that it didn't seem like worth given up dairy and wheat. However, as my symptoms worsen, I've been a lot more focused on trying to figuring out what the cause could be.

I recently had a blood test, and was found to have insufficient levels of B12, and Vitamin D (even though I Take B75 Complex and Multivitamins), and my ALT score indicated that there might be a problem with liver function. I requested a second blood test after that for gluten intolerance, but surprisingly that needs 5 weeks to come back? So now I'm pondering whether or not I should eliminate gluten now anyway, knowing that even if the blood test came back with any indication of intolerance to gluten, I will probably need to get a probe done. I feel completely exhausted now, and I just want to know what is wrong. My biggest issue is brain fog, and with my line of work, the inability to concentrate is really hard to deal with. Anyway I'm not sure why I wrote all this out, I guess looking for feedback? Thanks anyway for reading this...

Share this post


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


i don't have a clear-cut answer for you, but have 2 thoughts. one is that the blood tests often are not accurate. the truely gold standard test is if you go completely gluten-free for a minimum of 6 weeks and then your symptoms clear up.

however, if you are going to get tested, you should do the blood test and wait for results (which should take less than a week) before you go gluten-free.

my daughter had the blood test done last january and it came back negative. this november she went completely gluten-free and within 4 days we could tell that was the source of her problems. so . . .

gluten intolerance/celiac disease is tied to over 300 other diseases. some have very strong ties and some are more indirect. if i were you and feeling miserable, i'd give it a serious 6 week effort and skip the testing. just my 2 cents worth.

Share this post


Link to post
Share on other sites

Had crepes last night and just woke up 10 minutes ago with the worst heartburn ever, felt like i wanted to puke but instead kept bringing up large amounts of saliva that I kept spitting out. Anyone ever experience that or know what that is?

Share this post


Link to post
Share on other sites

It's called pre-puke, or trying not to puke. I sometimes get like that if my body is rejecting all the supplements I just took and I am trying to keep them down :lol: Once, I did not succeed :ph34r:

Share this post


Link to post
Share on other sites
Ads by Google:


I don't remember for sure, I remember losing weight which was good :) But I remember mostly grumbling about all the things I couldn't eat anymore :P. I'm going to go gluten free in 2 days for another few months to test. The problem is if I'm to have a biopsy it will be in at least 1.5-2 months minimum so I don't want to skew the results of that by going gluten free now. How quickly will the small intestines recover?

Share this post


Link to post
Share on other sites

Hi maybe_maybenot,

It is hard to say if you have a gluten problem, but you already know you have a B12 ( and D ) problem. A B12 deficiency can cause all the symptoms you've listed. Standard B-complex and multivitamins will not do much to fix the situation. I use Enzymatic Therapy B12 Infusion, which is a sublingual methycobalamin lozenge. Used properly this will get a good amount b12 into your system. I would suggest you visit the Phoenix Rising Forums and look at the "Active b12 Protocol" thread. There is ton of information there and I think you will find many posters with with similar symptoms. Good luck.

Share this post


Link to post
Share on other sites


Ads by Google:


Sorry you are not feeling well, it can really wear you down.

Ynot is right in suggesting the sublingual B12 tablet. B12 is best absorbed in the mouth; that goes for D3 vitamins too. I take 1000-4000UI of sublingual D3 throughout the day. It's a good idea to take calcium a few times a day along with the D3 because a body can only absorb a certain amount of calcium (I think it's around 700mg) at a time, and celiacs are often low in calcium (and ferritin and potassium) too.

Make sure the doctor ordered the right tests for celiac too. Since you have to wait so long for results, it would be a shame if you found out the wrong tests were ordered. I believe the most common tests for celiac are:

TTG IgA and IgG

total serum IgA

EMA IgA

DGP IgA and IgG

From what I understand on biopsies (I never had one), the healing starts when you stop making the auto-antibodies (in the above lab test) but that isn't always as soon as one stops eating gluten. Some show no intestinal healing until a few years have gone by, others start healing within weeks. To be conservative, I would try to continue eating gluten until mid-February so you'll only have been gluten-free for a few weeks to a month before your endoscopy.

Best of luck to you in what ever you decide.

Share this post


Link to post
Share on other sites

Thank you. I received the results of the test that was ordered, and the one score that stood out was an elevated IgA score (45 when the expected score was less than 20). Alone it's not indicative of much as a few things can cause that apparently, but gluten sensitivity is one of them.

Sorry you are not feeling well, it can really wear you down.

Ynot is right in suggesting the sublingual B12 tablet. B12 is best absorbed in the mouth; that goes for D3 vitamins too. I take 1000-4000UI of sublingual D3 throughout the day. It's a good idea to take calcium a few times a day along with the D3 because a body can only absorb a certain amount of calcium (I think it's around 700mg) at a time, and celiacs are often low in calcium (and ferritin and potassium) too.

Make sure the doctor ordered the right tests for celiac too. Since you have to wait so long for results, it would be a shame if you found out the wrong tests were ordered. I believe the most common tests for celiac are:

TTG IgA and IgG

total serum IgA

EMA IgA

DGP IgA and IgG

From what I understand on biopsies (I never had one), the healing starts when you stop making the auto-antibodies (in the above lab test) but that isn't always as soon as one stops eating gluten. Some show no intestinal healing until a few years have gone by, others start healing within weeks. To be conservative, I would try to continue eating gluten until mid-February so you'll only have been gluten-free for a few weeks to a month before your endoscopy.

Best of luck to you in what ever you decide.

Share this post


Link to post
Share on other sites

Thank you. I received the results of the test that was ordered, and the one score that stood out was an elevated IgA score (45 when the expected score was less than 20). Alone it's not indicative of much as a few things can cause that apparently, but gluten sensitivity is one of them.

On which IgA test did you receive that score, and what were the ranges the lab used? Was it the tTG test? If so did they also do the quantum serum IgA test? If it were the tTG test that was positive, they will need to do some other testing, because that one is not specific for celiac disease.

Share this post


Link to post
Share on other sites


Ads by Google:


On which IgA test did you receive that score, and what were the ranges the lab used? Was it the tTG test? If so did they also do the quantum serum IgA test? If it were the tTG test that was positive, they will need to do some other testing, because that one is not specific for celiac disease.

The uni of Chicago argues with that. They say its one of the best ways to test for it. :blink:

"For most people, the serum anti-tissue transglutaminase (tTG-IgA) is the best antibody blood test for screening for celiac disease; however, it is important to also get a total serum IgA. Having this total serum test will help bolster the reliability of the tTG test. The reason for this is that while the tTG test is very reliable, its reliability is dependent on the premise that the person being tested adequately produces IgA. If the individual does not produce sufficient amounts of IgA and is instead IgA deficient, then tTG-IgG should be tested instead."

Found here http://www.curecelia...onals/screening

Though they also say that a biopsy is still required <_< was that what you meant?

Share this post


Link to post
Share on other sites

A new generation of tests that use deaminated gliadin peptides (DGP) have sensitivity and specificity that are substantially better than the older gliadin tests.4 DGP tests are more accurate than tTG and AGA and may be the most reliable tests to detect celiac disease in people with IgA deficiency.

http://digestive.nid...iactesting/#ttg

DGP (Deamidated Gliadin Peptide)

This is a newer type of gliadin test, initially developed and manufactured by Inova Diagnostics. It was developed to more accurately identify people with celiac disease. Eventually, it might overtake the tTG test because it is excellent at finding those people who have gluten gut damage. This test detects an immune response to a very specific fragment of the gluten molecule (this fragment is a short peptide of gliadin – a gliadin peptide). Although this test is excellent for detecting celiac disease (in our Clinic I have found it to be more reliable that the tTG test), it does not detect gluten sensitivity.

It will not pick up the people who have the other symptoms of The Gluten Syndrome. It does not replace the IgG-gliadin test.

Because of its name, it is now frequently confused with the old IgG-gliadin test.

Value of DGP: If both high, then celiac disease is almost certain. Perhaps more reliable than tTG for young children.

http://drrodneyford....lood-tests.html

The DGP is very specific to celiac disease. The tTG can be elevated for other reasons. That is what I meant. And without knowing the quantum serum IgA there is no way of knowing if the tTG is a valid score.

Share this post


Link to post
Share on other sites

Thank you. I received the results of the test that was ordered, and the one score that stood out was an elevated IgA score (45 when the expected score was less than 20). Alone it's not indicative of much as a few things can cause that apparently, but gluten sensitivity is one of them.

Was it just IgA or one of the celiac tests: ttg IgA or EMA IgA or DGP IgA? ... The doctors made this so confusing.... LOL

I believe elevated ttg IgA levels can be caused by things like e.coli, Hashimoto's, and a few others but it usually points to celiac. I thought it had a specificity of about 80% but I just found an article that says it's 95%. That means that 95% of the people with a positive test are celiacs.

IgA is often lower in celiacs than in the rest of the population; I've read that in a few places as well as here. That's why total serum IgA needs to be tested for the ttg IgA and EMA IgA tests; if IgA levels are too low, those tests will have false negatives.

DGP tests are new and very specific to celiac. Their newness is the problem though since many doctors just don't keep themselves current.

Share this post


Link to post
Share on other sites

Was it just IgA or one of the celiac tests: ttg IgA or EMA IgA or DGP IgA? ... The doctors made this so confusing.... LOL

I believe elevated ttg IgA levels can be caused by things like e.coli, Hashimoto's, and a few others but it usually points to celiac. I thought it had a specificity of about 80% but I just found an article that says it's 95%. That means that 95% of the people with a positive test are celiacs.

IgA is often lower in celiacs than in the rest of the population; I've read that in a few places as well as here. That's why total serum IgA needs to be tested for the ttg IgA and EMA IgA tests; if IgA levels are too low, those tests will have false negatives.

DGP tests are new and very specific to celiac. Their newness is the problem though since many doctors just don't keep themselves current.

I've also read that, because of that, they aren't exactly sure if its more spacific than the IGA TTG tests. It could be because of the newness as well.

From the chicago site:

"There is also a newer version of the old screening test that checked the levels of anti-gliadin antibodies, called DPG (for deamidated gliadin peptides). While evidence shows these tests to be as reliable as the tTG, they are not necessarily better than the tTG."

http://www.cureceliacdisease.org/medical-professionals/screening

Share this post


Link to post
Share on other sites

I have been gluten free for a few weeks and feel 95% better:) I might have a problem with dairy when I eat too much of that (gas) but there was only 1 day I felt sick and I think I accidentally glutened myself but other than that....no gluten = almost back to normal for me.

Share this post


Link to post
Share on other sites


Ads by Google:


I saw a Gastroenterologist today and he saw my blood results (it was IGg that was elevated not IGa, sorry). Anyway he said the test that was ordered by my physician was out of date and made me take a different one (ttg). He will be doing an esophegeal and small intestine scope and biopsy (March 5 or sooner).

I'm also seeing an allergist next week, that should be interesting. As a side note, 3 years ago I did an environmental allergy test and reacted to every allergen, in fact the doctor didn't believe it and retested me on another arm and again reacted to everything.

Share this post


Link to post
Share on other sites

That's good you're getting the right blood tests and the scope. And of course, the diet itself can be the real test for those of us with GI symptoms.

Did your previous allergy test 3 years ago include foods, too?

Share this post


Link to post
Share on other sites

I saw an allergist and he did a skin prick test, and I came back negative for all foods, including gluten and dairy.

do remember that celiac is NOT an allergy!

Share this post


Link to post
Share on other sites


Ads by Google:


Yes my previous allergy test actually did have food allergens, and according to that test I was allergic to everything.

I'm going in for my intestinal biopsy (as well as esophagus) on tuesday.  Personally, I'm just really exhausted... hoping to find whatever is causing all of this.

Share this post


Link to post
Share on other sites

Did you feel better when you were gluten free for two months?

I felt so much better. I guess for me the biggest improvement was my lack of migraines. Before cuting out gluten, I used to get 2-3 a week and that had been the case for 12 years. Sometimes they'd span several days. Now I only get 2-3 a month. HUGE change for me. Plus I don't have constant stomach cramps and pains anymore. I won't lie though after 2 months I was still strugging with what I could actually eat so my meals were kind of the same thing over and over.

Share this post


Link to post
Share on other sites

Had my biopsy today.  The dr. said there wasn't much in the way of physical evidence to indicate an issue, although he said there was a fair bit of damage at the bottom of my esophogus from acid.  They did a biopsy and the results of those should be available in 2-3 weeks.

Share this post


Link to post
Share on other sites

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
      108,387
    • Total Posts
      941,002
  • Member Statistics

    • Total Members
      66,398
    • Most Online
      3,093

    Newest Member
    Maria Jose
    Joined
  • Popular Now

  • Topics

  • Posts

    • Haha, Ennis that's given me no excuse not to make it now!  I've been faffing around about it but now I think I must try it out! They honestly don't sound too hard to do either. The Keto Chocolate frosting I think I can make today if the avocados are ripe enough. I just got some maple sugar and maple syrup (I know I'm bad) but I'll look at the sugar free one. I know I don't feel too well if I eat pure sugar but I couldn't help it. I think I have everything else and it sounds super good. Thanks so much Ennis!!
    • LONG POST incoming I got my cheese sauce recipes compiled and going to throw in my frosting....and yes I normally eat it by the spoon, I make a sugar free version with lakanto. 4 Of my Favorite Cheese sauces
      Will list the ingredients for each one, they all use the exact same cooking method which will follow.
      Super Sticky Mozzarella
      1/2 cup of cashews soaked over night and drained
      1 cup water
      1 tbsp Nutritional Yeast
      3 tbsp Tapioca Starch
      1 tsp Apple Cider Vinegar
      1/4 tsp garlic
      1/2 salt Poor Mans Mozzarella
      3 tbsp coconut flour
      1 cup Unsweetened Plain Cashew or Almond milk (refrigerated version)
      2 1/2 tbsp Tapioca Starch
      2 tbsp Nutritional Yeast
      1 tsp Apple Cider Vinegar
      1/4 garlic powder
      1/4 salt
      1/2 tsp Psyllium husk unflavored Cheddar
      1/2 cup of cashews soaked over night and drained
      1 cup water
      1/4 cup Nutritional Yeast
      2 tbsp Tapioca Starch
      1 tbsp Apple Cider Vinegar bit more if you find the bite lacking and for a sharper one
      1/4 tsp garlic
      1/2 salt
      1 tsp Annatto
      1/2 tsp Psyllium husk unflavored 1. Blend all the ingredients for you cheese flavor very well in a blender
      2. In a sauce pan heat over medium high stirring CONSTANTLY for 5-10 mins. First it will start forming clumps then it will thicken up. Remove from heat and stir a bit longer til it cools to prevent burning. Sometimes I use Lemon Juice in them in place of the vinegar, this really depends on your preference to a more citrus blend or a more bite in your cheese. Any feed back or blends you do with them? Would love to hear about some suggestions for blends. Vegan Queso 10-12 rounds of eggplant, sliced 1/4-inch thick 1 whole egg plant
      spray oil
      1 1/2 cups unsweetened original almond milk (or milk of choice)
      4-6 Tbsp nutritional yeast
      1/2-1 tsp finely minced fresh garlic
      1 to1 1/2 tsp cumin
      1 1/2 tsp chili powder
      1/4 cup chunky medium salsa, slightly drained 1. Slice your eggplant into thin rounds just under 1/2 inch (not quite 1/4 inch), then sprinkle both sides of the flesh with a little sea salt and arrange in a colander to help draw out some of the moisture and bitterness. Let set for 10-15 minutes, then rinse with cool water and thoroughly pat dry between two clean towels.
      2. Preheat oven to high broil and place an oven rack near the top of the oven. Arrange the dried eggplant rounds on a baking sheet lightly spritzed with non-stick spray and spray both sides of the eggplant with a little more oil. Sprinkle with a very small amount of salt.
      3. Broil on high for 2-3 minutes on each side, watching carefully as to not let them burn. Flip at the halfway point to ensure even cooking. Once the eggplant appears tender and both sides have golden brown color, remove from the oven and wrap loosely in foil to steam.
      4. After a few minutes, unwrap and peel the eggplant skin away. It should come right off. If you pack your roasted eggplant into a 1-cup measuring cup, it will be 1 cup.
      5. Place eggplant in a blender with the 1 1/2 cups almond milk, 4 Tbsp nutritional yeast, minced garlic, cumin, chili powder and blend on high until smooth and creamy. Taste and adjust seasonings as needed. I added a pinch more garlic and a little more nutritional yeast. To thin, add more almond milk.
      6. Transfer to a small saucepan and warm over medium to medium heat until slightly thickened and bubbly – about 5 minutes. The longer you go the thicker it will become. (Keep Stirring)
      7. Once hot and thickened, remove from heat and stir in DRAINED salsa or Rotel. Don’t put the liquid in or it will make it runny. Pour into a serving dish and top with a little smoked paprika and hot sauce for flavor/color. (If it looks like it has little clumps in it you need to blend it more) I have had success using both cashew and almond milks for this, I also found adding a tsp of flour like coconut helps with the thickening and richness.I personally like adding a bit of annatto or 2-3 pieces of sun dried tomato when blending to give it a deeper orange color. GOES GREAT with Roasted Orange or Red Bell Pepper This dish was inspired by Baba ghanoush served at a small restaurant in Dallas.


      Keto Chocolate frosting
      2 large ripe avocados
      1/2cup cocoa powder
      6-8tbsp Lakanto Sugar Free Maple
      1/4 tsp vanilla extract
      pinch of salt Thin out with a bit of almond milk if needed to desired consistency
      Blend all in a blender or a food processor until completely smooth.
       
    • I remember on here that they are OFTEN grown on something that contains gluten. I watched a video before but I can't remember the details. The thing is they are supposed to be super nutritious and also they just taste really good. They definitely were making me sick about a year ago but I didn't know about the gluten. If I go to the grocery store how can I know? Are there certain kinds that aren't grown with gluten or do I just need to contact the growers?  
    • I never heard of goat butter but I guess I could make it if I had raw goats milk. Which I don't at the moment. I'd have to see if anyone has goat's milk kefir, billions of probotics would be good though! I've heard of ghee but I'll have to look up how to make it. It's interesting that you are okay on those items in moderation even though you can't have cow's milk. I'll have a look around locally and see what there is. I think I did read that when you make cheese or butter (or ghee) it greatly lessons the lactose. If I do try it it will be only really small amounts. Anyways, that's what I wondered, that some people can't have cows milk but can have goats milk products. So that's really interesting to me.
    • I'm not sure if it's lactose. If I experiment and still feel awful from it it might be that. And I want to try making those nut cheeses sometime soon. I ordered some cooking stuff and mesh strainers to try and make almond milk so maybe I'll try making some cheese at the same time. Coconut cheese sounds intriguing. I'll look that up too. Nut butters I over did and then didn't feel so great but that was over 6 months ago so I could try a little and see. I could just start with small amounts. I think too my stomach just couldn't digest fat at all before and it seems like it's a bit better now. Avocado I can do now! I couldn't before and I'm so glad it's back. But I've only sliced it into salads so far so avocado ice cream and guacamole sound crazy good to me right now. Anything I can make ahead and keep for a few days is good too. Avocado frosting - can I eat that just with a spoon? I know the thing about having milk from animals. I don't know if it really helps but when I have had any I try to find somewhere where it's not mass produced. Like there is a family near by that has some goats and you can have milk but they only do that in the spring and summer. The goats seem okay but I know what you mean. And it is pretty weird if you think about it. : (  
  • Upcoming Events