Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • 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 FREE Celiac.com email alerts 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Gluten Allergy? Looking For Help/advice!
0

3 posts in this topic

Hello everyone, I hope its ok to post this here, and I apologise in advance for the length of this, I hope someone takes the time to read it all and help me or give me some advice!

My name is Ben, and I have just turned 22, for the past year and a half I have had a constant pain in my stomach/belly, it never goes away or eases up, it stays there all day, all night, not a minute of relief.

I went to the doctors and had urine/blood tests done, I'm not diabetic, I then spent 8 months on medication for stomach ulcers, they did nothing so I had the test where a camera is inserted down your throat, I am all clear of ulcers.

my doctor then sent me on my way with the words "There is nothing left it could be"

I later returned and was told it could be IBS, however I don't have any of the symptoms apart from stomach pain, however the doctor said with IBS the pain is only present for a short amount of time, but mine never goes.

They don't seem to understand that my life has come to a stand still, I have done nothing for the last year as I am just in pain all the time, and it makes you feel very fatigued.

I Recently switched to a gluten free diet in hopes that this could be the cause, I felt no difference, 2 weeks on the diet go by and I eat some bread that is not gluten free, and I suddenly notice the pain has increased, so I think the pain is slowly going, but its so slow i don't notice until i eat something that sets it off.

I have been gluten free for 5 weeks now, however I have had the odd gluten meal when I have been stuck out etc...

I still have discomfort in my belly while on the gluten free diet, but its no longer a huge pain, but its not 100% gone..

So basically i wanted to know if anyone has had a similer expericance to this?, am I on the right track? how long did it take for your pain to clear after starting a gluten free diet?

what steps can I take to solving this?

I hope someone can help me, im sorry if this is posted in the wrong place <3

0

Share this post


Link to post
Share on other sites


Ads by Google:

Welcome to the board. Benn.  :)

 

It sounds like gluten could be an issue for you - I think you are on the right track.  However, you might want to consider being tested for celiac disease before you go gluten-free.  Eating gluten-free will eventually cause all celiac tests to show a negative result once the autoimmune reaction finally stops.  To get a positive test, you must be eating gluten (equivalent of 1-2 slices of bread per day) in the 8-12 weeks prior to blood testing.

 

The blood tests you want are:

 

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

total serum IgA (a control test)

AGA IgA and AGA IgG (older and less reliable tests)

 

You can also have an endoscopic biopsy done to look for the intestinal villi damage caused by celiac disease.  It only requires a 2-4 week gluten challenge.

 

If you are not going to test for celiac disease, and you still want to determine if gluten is a problem for you, then you will have to tighten up your diet to 100% gluten-free.  Right now it sounds like you are eating "gluten-lite"; in order to reap the benefits of the gluten-free diet (if gluten is a problem for you) you will need to be totally gluten-free.  No cheats, check all labels, recheck your spices, sauces and cooking supplies, get rid of contaminated foods (like sugar that had a flour coated measuring cup dipped into it), and check your kitchen tools for cracked and scrathed items that could have gluten in it.... The toaster has to go too.

 

Once gluten-free, keeping a symptoms and food journal will help you keep track of changing symptoms.  Some of my symptoms were very slow to change so being able to look back and compare really helped me.

 

I had some symptoms that improved in the first week. A few more got better in the first month, and most were gone within the first 9 months.  I still have some symptoms that I'm hoping will disappear after 2 years gluten-free.  LOL  Generally, I advise people to give the diet close to 6 months before you judge it's effectiveness.  Prior to that, a bit of backsliding is common so waiting longer to judge is a good idea.

 

Also, about half of all celiacs are lactose intolerant before starting the gluten-free diet. Eventually many celiacs regain the ability to tolerate milk, once the villi which make lactase heal, but in the mean time, lactose intolerance can cause quite a bad pain.  Perhaps it is something else to consider.

 

L-glutamine can help with faster healing too.... That's my only trick.  

 

Good luck with whatever you decide to do.  Let us know how it goes!

0

Share this post


Link to post
Share on other sites

My abdominal pain was actually a B12 deficiency. It wasn't constant, but the pain could be bad for months at a time. The nerves in your digestive system are the first to act up if you're low on B12. And if you get tested, definitely get a copy of the results. The U.S. range for normal goes much lower than some other countries and symptoms can occur at levels that still fall within the normal range. U.S. low = 200. Japan's low = 500. My lab results came back with a notice that symptoms can appear at levels below 400.

But that is the only idea I have for what could be causing the pain because that is what caused my pain. There are a ton of things that can go wrong in the digestive system so I'd keep looking answers. I personally abhor the term IBS because it basically means the doctor gave up trying to figure things out. 

Vitamin and mineral deficiencies are easy to test for, just a blood draw and aren't that expensive so I'd start there.

But if you do turn up being deficient in something - then you have to start asking why, and gluten intolerance is on that list. When they run the tests, if you have multiple deficiencies, it can also lead you in one direction or another as to possible causes because some combinations are more common for some health issues. I'd also note that just going gluten-free is not enough to correct vitamin deficiencies. You need to do more than wait to heal and eat well to correct many of them. I'm not a fan of supplements, but they can be a necessary evil.

Also, if you check back, describing the pain a little might help people come up with other ideas. For instance, cramping could mean a different problem than bloating. And where the pain is, left/right, top/bottom can mean different things as well.

Gluten intolerance generally means bloating and either constipation or diarrhea or both, though lots of people add on a few additional symptoms as well. Fructose intolerance is known for cramping and diarrhea. All-over pain and feeling as if you have hard knots in your intestines and sometimes shooting pain the spleen would be how I would describe my B12 symptoms.

0

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
      103,367
    • Total Posts
      917,515
  • Topics

  • Posts

    • Gluten And Vertigo
      Christiana, I just felt to look at the site. I thought I had clicked to get email alerts. But, actually my email has been 'fritzing' sort of.  Thank you for your note. It is important for my diagnosis. I was diagnosed with chondritis of the collar bone a few months before the fall that resulted in the immobile right arm. The osteo surgeon gave me a cortosol shot that helped a lot. That MRI showed a rotator cuff tear nearly 2/3 thru the strip of tissue that connects the muscle tissue to the bone and makes the shoulder 'rotate' in place.  That was almost a year ago now. I have been learning to be very very mindful about how I use that arm, when I reach, carefully, how I rest it and sleep position. Interesting that I did see a search answer that said ' they are saying now that there could be a connection btn rotator cuff tear and inflammed collar bone. My primary doctor also said I could have an inflammed chest wall that resulted in the chondritis. I remembered that word from a child's diagnosis years ago. That was in his knees and was treated by this same osteo surgeon, by casting the legs over summer holiday, which ended in healed x-rays. That was osteo chondritis desicans. He said then, 'if it is horses, we would have to shoot them.'  I tried to get a blood test three weeks ago for the same antibody we were treating that child with thru his then pediatritian, for rheumatoid antibodies/ recurring strep throat. I had gotten a 'sort of' diagnosis, or agreement from that primary care doctor, allowing me to get the recommended antibiotics (one of the few treatments that it is allowed, because of the need to keep the hearing). But, his new nurse did not relay the request properly. I hate doctor office politics. I hope this newbie is not going to mess with this doctor's little family as well. Last month when researching Meniere's one of the things listed about it was that autoimmune disease is connected to it also. I was hurt before the falls and the inflammation and the collar bone chondritis and the rotator cuff tear. I was very very concerned about it setting off some kind of autoimmune inflammation reaction or worse that can happen when tissue cells are being repaired rapidly and it felt like lots of toxins were being cleansed and processed over a period of many months. The only similar feeling I have ever experienced was when I had a 'deep tissue massage' to release and cleanse a cortisol 'hump' I had after a prolonged period of high family stress situation. Right now, my primary (an O.D. , or osteopath) is working with me. There are two ENTs in this area he offered for Meniere's and has given me Physical Therapy at his complex for Balance Therapy. It is great that that therapist has a MIL that is also dealing with Meniere's and getting exercises from a major hospital complex in the city. I was able to give her some celiac's diagnosis information. Sounded like her MIL and her son were likely to be candidates.  I did not know what the definition was of the term 'vestibular' as in vestibular migraine, another connection to Meniere's. I just typed www.bing.com and then typed 'definition of vestibular.' That had information about the connections btn hearing and sitting positions. I will look up costochondritis. Thank you, again. Best wishes, Anne
    • What Are Your Brands & Flavors Of Gluten Free Ice Cream ?
      I don't worry about the same facility, but I check if it is on the same lines. I think it is usually a good idea to find out if things are made on shared lines. And if they are made on the same line as gluten-containing products how good is the cleaning in between? Chocolate is a good example of this. For example, I contacted a company whose chocolate I used to eat before being diagnosed and they outright told me they are not good about cleaning on shared lines and it is not safe for allergies or celiac. I have had this response from other companies as well (especially when it comes to chocolate sadly). I think this is why Godiva is not safe. Its just a good idea to check.
    • TRUSTING OTHERS about GLUTEN! how do you know if someone has used gluten free flour?
      Wow you all have more balls than I do. I've been gluten free since 2007 and I'm still afraid of offending people. It gives me lots of troubles, really. I'm more like rockstarkate I guess...the "people pleasing" aspect.  I love how you all just have the flat out rule I Will Not Eat It Unless I or a Celiac Made it. (Or a trusted family member).  I still simper and grovel and cringe and apologetically turn things away.  People still put dishes in my face and say "This should be gluten free..."  and I have to awkwardly not eat it and then seem rude.  I've done the whole...checking the bottles thing too.  I do try to dart out of things more though now. I volunteered in other countries in recent years and I felt as vulnerable as all heck, having to rely on them to make food, as well as definitely feeling like I offended people who didn't get it at all. I was feeling brave when I signed up for those but after the second time I was like okay, the fear/anxiety/stress about the food is too much. I managed to dodge out of getting sick, and for the most part people humored me...but it was pretty difficult because I don't like offending people, especially other cultures, with them trying to be nice and make food for me...pretty sure I did offend people as well as annoy many others.  Anyway...no OP, you are not alone. For sure I have trust issues eating other people's food. They say they know but I do truly doubt they are as strict as I would be.   A few times I will still brave eating something...like some little mozzarella balls with vinegar...though, I did still look at the labels.  Someone had to give me a persuasive speech and show me all ingredients (just salt and pepper) after making me chicken wings once. I do tell people, basically, NOT to make me stuff. But they still do.  Another time a friend had worked really hard and was having a terrible time and offered me a burger patty when I arrived, assuring me it was gluten free. I knew I hadn't been there to watch whether she used the "bun spatula" on it or not...but I just didn't feel like giving her a fight about it since she was having a rough time and hosts like to feel they are feeding guests, blah blah. So I ate it. And got glutened. And wailed and gnashed my teeth haha. Lesson learned.  I need to stick to my guns more. I just always feel like I'm being too "difficult" as it is. But...sigh.  It is refreshing for me to read these empowered no BS responses though. You all remind me of where I'm coming from, and not that I'm just being some kind of high maintenance, rude, crazy person. You'd think after, what, nine years now, I wouldn't still be bothered by it...
    • Mashed potato soup during healing
      I was on pretty much a liquid diet for 8 months waiting for my nausea to go away completely. I mostly had mashed potato soup, 1/2 fat ice cream (mostly whey, not milk), chocolate drink (no added milk) and gummy vitamins. The soup tasted yummy and I'm still alive so I figured I'd share it for people not feeling well in the beginning. I've been noticing people with alot of trouble keeping food down in recent posts. I couldn't have milk or eggs, but the cheese in the recipe didn't bother me at all. Notice the lack of spices. Makes it easy on the stomach.   Mashed potato soup: Boiled yukon gold potatoes (5lb bag) 1 package cauliflower, steamed 4-6 slices of Land O'Lakes white American cheese 4 tablespoons butter salt 16 cups homemade chicken broth, salted   Chop steamed cauliflower into teensy bits (pureed is better). Put in mixer with butter, cheese and a potato or two. Blend while slowly adding potatoes. Keep whipping for a few minutes to insure the cauliflower and potatoes are not lumpy at all. Salt to taste.   Combine 1/2 cup mashed potatoes to 1 cup salted chicken broth. Mix with spoon until mashed potatoes have completely dissolved. Enjoy. Individual servings can be frozen.   Homemade chicken broth: makes 8 - 10 cups of broth   1 organic chicken (regular chickens are too big) 1 stalk celery 1 carrot 1 large bay leaf 1/2 package fresh thyme from the  herb section of the vegetables area   Put all ingredients in pressure cooker along with 1.5 liters water. Bring to pressure. Cook for 35 minutes. Separate broth from solids. Separate broth from fat. Add ridiculous quantities of salt until it tastes like soup. Sorry I use a salt grinder so I don't have precise salt quantities.    
    • Celiac.com: Gluten-free options increasing to meet demand
      “Over the last 10 years there's been an explosion of gluten-free products,” said Shelley Case, a registered dietitian specializing in celiac disease and ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,513
    • Most Online
      1,763

    Newest Member
    ajrosales
    Joined