Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!

Not Celiac - So How Do I Know If I'm Still Gluten Sensitive?


AMaine

Recommended Posts

GFinDC Veteran

I think the goop they give you to drink before a colonoscopy is called Movi-prep or some such. Basically cleans your insides out clean as a whistle. Thee are threads on here where people talk their experiences with the prep and such. Don't plan to go anywhere the day before the test but the bathroom.

I used to have green stool which later became black stool. They say the black indicates bleeding, usually not in the colon though, but higher up. Red blood is supposed to come from the colon. I think the idea on that is if the blood come from higher up it gets digested or broken down so it isn't red any more. I think that is kind of a general thing though, not true in every case.

All that just to say that it is possible to have bleeding and not have Chrohn's. Because I don't have Chrohn's.

Also, you should not expect all your symptoms to clear up in a month. Some people have symptoms continue for years. Not saying at all you shouldn't be checked here, just that still having symptoms doesn't mean their is a more serious problem. If you read my signature or others you can see lists of some other foods that can be problems. Also, eating a whole foods diet is going to get you better faster than eating a lot of gluten-free processed foods. A simple diet works well for us.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



AMaine Newbie

Hahaha I actually have to play piano (and sing) for my church the morning before. I figure I'll start the delicious meds immediately after. My directions sheet says to start at 10 but I'm hoping starting at 12 won't make too much difference - I can't get a replacement and I don't fancy running for the bathroom in the middle of the service. I'm not scheduled until noon the next day so I think that should give me plenty of time.

I really doubt I have Crohn's - my best friend from college has it, so I am VERY familiar with the symptoms of the disease and I have nothing like what she went through.

I think I've gotten it through my head that my symptoms may not all clear up in the first month - but I still hate being even a tiny bit uncertain. I honestly think that if I'm not 100% convinced in the next month or so, I will just go ahead and eat some gluten and see what happens. If what I think will happen happens... then I'll know. This will make me feel better.

Link to comment
Share on other sites
Jessica N. Rookie

Hahaha I actually have to play piano (and sing) for my church the morning before. I figure I'll start the delicious meds immediately after. My directions sheet says to start at 10 but I'm hoping starting at 12 won't make too much difference - I can't get a replacement and I don't fancy running for the bathroom in the middle of the service. I'm not scheduled until noon the next day so I think that should give me plenty of time.

I really doubt I have Crohn's - my best friend from college has it, so I am VERY familiar with the symptoms of the disease and I have nothing like what she went through.

I think I've gotten it through my head that my symptoms may not all clear up in the first month - but I still hate being even a tiny bit uncertain. I honestly think that if I'm not 100% convinced in the next month or so, I will just go ahead and eat some gluten and see what happens. If what I think will happen happens... then I'll know. This will make me feel better.

I can relate to a lot of what you are going through. I am on week 4 of gluten free (week 2 was BAD, I ate lots of processed gluten-free foods and I'm not use to processed so my stomach and intestines were waaayyyy off track). I THINK I am feeling better, bloating is no longer my biggest complaint as it was in the past, but I still get bloated. I feel so discouraged bc like you I want to know if this is it. How long will I have to eat this way to be sure if I am having issues with gluten? It seems so frustrating! I thought I was having issues with dairy the past 3 weeks, but this week I haven't noticed any relation...I feel like I am all over the place. I have C and don't usually get a relieved feeling after BMs, so my doctor wants a colonscopy and also prescribed me an anti-spasmodic to help relax me so I can have more frequent BMs. He said the non-relived feeling could be IBS, can you have IBS and celiac or gluten issues?

Link to comment
Share on other sites
AMaine Newbie

The colonoscopy was AWFUL. The prep, which everyone told me was the worst part, was only mildly irritating. The worst part was the IV. It turns out that colonoscopy prep (which leaves you dehydrated) + Raynaud's disease (which makes your blood vessels contract) is a seriously bad combination. About 5 or 6 different people tried to give me an IV, for a grand total of TWELVE jabs. I am bruised from the elbows down - and I'm a choir teacher so I have to play piano. I am sore and miserable. Fortunately they finally got it, or I was about to have an unsedated colonoscopy. I know people have done it but I did NOT want to.

If I don't actually learn something from this, I am going to be seriously annoyed.

Link to comment
Share on other sites
AMaine Newbie

So the colonoscopy results showed nothing, and I still don't feel right, so I give up. I just ate a full meal of gluten and I'm not feeling any different yet. How soon until I should notice something if I am going to have effects at all?

Link to comment
Share on other sites
Katrala Contributor

Anyone who has been off gluten for awhile may have a reaction when they reintroduce it (this goes for many different foods as well.)

Some people have immediate reactions. Some are more of a built-up reaction. It's really hard to say when / how you will react (if you do react at all.)

Is your doctor going to keep looking for causes?

Could there be any other type of food intolerance going on that you're suspicious of?

Link to comment
Share on other sites
AMaine Newbie

My doctor has now ruled out pretty much everything else - the GI specialist has decreed it IBS. Which, I understand, doesn't mean that I don't have a problem with gluten. I was actually told that I had IBS a few years ago (after an insufficient celiac test and not being informed that not having celiac isn't assurance that you can eat gluten comfortably). In the past 2 years I have therefore tried cutting out pretty much everything BUT gluten to no avail. The only thing that I discovered that really bothered me was sugar alcohols, especially sorbitol.

So, I ate some bread (and a cookie) last night and had no immediate reaction. I actually feel pretty fine today too, but I did have a minor migraine this morning for the first time in weeks (lack of migraines has been one indication that has made me feel like the gluten free diet could be working) and while I haven't had major stomach problems, I've been feeling generally like I have mild menstrual cramps. Except, of course, I don't.

So I've decided to stay mostly gluten free, but to stress about it less. I don't mind doing it at home at ALL - the only thing has been ordering when we eat out (which my husband and I like to do a lot) and not being sure if something might have a slight gluten ingredient in it. So with such a mild result, and knowing that i don't have celiac or some other situation that would make eating small amounts of gluten hazardous to my overall health... when we go out, I'll order the most gluten-free item on the menu and not stress if there's something a LITTLE in it. This plan makes me feel MUCH better. I can live with this, even without the 100% certainty that I have a gluten intolerance (still wish I could have that certainty).

I'm also very pleased with myself for having found a bread pan that is long and narrow to hopefully create the perfect sandwich size bread. Feeling a lot calmer and less frustrated!

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



kendon0015 Rookie

I just posted on another thread....PLEASE be sure to have a stool test. I am now being treated for C Diff, a nasty bacterial infection in the intestines. I was on Cipro for three UTI's in a row, and it caused this bacterial overgrowth. Have you been on antibiotics in the last several months?

I'm not a doctor, but MY advise is to start on a good probiotic right away.

Link to comment
Share on other sites

Archived

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

  • Get Celiac.com Updates:
    Help Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to Larzipan's topic in Related Issues & Disorders
      16

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    2. - Julie Riordan replied to Julie Riordan's topic in Traveling with Celiac Disease
      3

      Any ideas for travelling

    3. - Nedast replied to Larzipan's topic in Related Issues & Disorders
      16

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    4. - trents replied to SuzanneL's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Weak Positive Test

    5. - SuzanneL posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Weak Positive Test


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,495
    • Most Online (within 30 mins)
      7,748

    Zofosho
    Newest Member
    Zofosho
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. There have been many posts on this subject on the forum, it is interesting to read of your experiences. Although I've not had TMJ, except from time to time have had a bit of mild tension in my jaw, I have had issues with my trigeminal nerve.  I read that sometimes a damaged nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.   Thank you again for your input.
    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
    • trents
      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
    • SuzanneL
      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
×
×
  • Create New...