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!

Three Months Gf With Zero Results


marielynor

Recommended Posts

marielynor Newbie

I haven't knowingly ingested gluten since early September (and have been excessively cautious about everything I've put in my mouth), and, after three gluten-free months, I feel no difference whatsoever. Granted, I've yet to be diagnosed with celiac, but I've had bloodwork done that suggested I might have it and I can relate to so many of the symptoms discussed on this site. Here's a short list: cramps, diarrhea, bloating, fatigue, joint pain, mouth sores, very rapid heartbeat after eating sometimes. A few I don't remember seeing mentioned on this site: raynauds phenomenon (which is where the blood vessels in your extremities constrict and stop the blood flow, so your fingers, toes, nose, ears, etc. turn white, numb, and very cold); I'm often uncomfortably, sometimes painfully cold; and I've had numerous strong positive ANA (anti-nuclear antibodies) blood tests. My dad is a doctor and my fiance is in med school and they both tell me it seems I have some sort of autoimmune or connective tissue disorder.

Does anyone know if celiac is associated with this type of disorder? Also, assuming no gluten is being unknowingly ingested, has anyone heard of it taking over three months of being gluten free to feel any kind of a difference?

For the past seven years, these stomach problems have been a constant source of stress in my life, but the past few days have been unbearable. I had a delicious gluten-free Thanksgiving dinner, but spent the entire weekend following it crying and feeling so completely frustrated and depressed because I felt so sick. It was all gluten-free. I know it was all gluten-free. I don't understand. Can anyone help? Thanks in advance.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



CindyK Rookie

Bless your heart! I just wanted to respond and let you know someone is listening to you. I am feeling very frustrated too. I can tell you that I have read several articles from this site that indicate a relationship between autoimmune disorders and celiac. I too suffer from what I call freezing spells and unbearable coldness in my hands, feet and nose. I have hypothyroid and it is regulated. I had always assumed the cold intolerence was caused by that. Believe me I don't mean to minimize it by using the word intolerence it is more like unbearable.

Good for you for sticking to the gluten free diet. I know you must feel discouraged. I have been reading this message board for several months and have noticed that it is not uncommon for people to experience ongoing symptoms after starting the diet. It seems there are so many factors such as learning there is Gluten where you least expect it, like a favorite drink, shampoo, etc. Also I have noticed tht other food intolerences seem to go along with this. I am trying to learn more now too but I have seen several people refer to Caseian (sp) intolerence. Also I have seen something called refractory celiac memtioned. celiac3270 tends to post some very helpful information and he seems to have continued to struggle with symptoms on the gluten-free diet. (Actually, all the posts have been very helpful but I have seen celiac3270 post consistently since I started checking in here.)

Don't give up. You will find the answer and your sticking to the diet is a very significant accomplishment.

Link to comment
Share on other sites
darlindeb25 Collaborator
:( i'm sorry you are having such a bad time---and yes--raynaud's does sometimes go hand in hand with celiacs--i have raynauds--since you have only been gluten-free since september--it may just be that you are one of us who takes longer to feel better and it is possible you are still getting gluten from something you havemissed--i still do and i have been at this for over 3 years--keep at it and i do hope you get to feeling better soon ;) deb
Link to comment
Share on other sites
Deby Apprentice

Rynauds, I never heard of that. This could be the expanation for my constantly frozen hands, nose and feet. Is there tingling and achiness as well?

I have to say I feel for you. It can take a long time to feel better. Are you sure there has been absolutely no change at all? Another thought is that you said you had stomach problems for seven years. It could be that you have had celiac for seven years or even longer since the problems don't crop up right off all of the time. That can take a long time to heal.

The suggestion was made to get off of milk (casien) as well. That's a good idea. You may not always have an intollerance for milk products but they are harder to digest, so getting off can give your body a chance to heal. Also think about corn, another had to digest grain that can cause trouble.

An elimination diet might be a good idea for you to see where you digestive problem is. With all of the talk about wheat and gluten, that has become a first line of defense, but with digestive problems, it may well not be the whole answer.

Good luck

Link to comment
Share on other sites
marielynor Newbie

To all who replied, thanks. I really appreciate the advice and support.

In regards to the casein issue, what's interesting is that the one time in the past seven years that I've felt normal was a couple years ago when I tried the Atkins diet. I ate almost nothing but meat and cheese for a couple weeks (I stopped because my dad convinced me of how unhealthy it was) and I felt fabulous, just like a normal human being. It almost seems I'm just allergic to carbs.

But perhaps I am unknowingly ingesting gluten. I just can't imagine where it would be coming from. I'm SO careful.

Anyway, thanks to all of you again.

Link to comment
Share on other sites
FreyaUSA Contributor

I have Reynard's also, but I also have nerve damage to my hands and arms (but thankfully not to my feet!) I never had the pain until the nerve damage happened. As far as the cold, during the winter I take very hot showers sometimes 2-3xs a day just to warm back up. I need a hot tub! :P

Marielynor, with celiac disease, one of the problems with not getting it diagnosed early is that it can cause you to not be able to handle other foods as well. Lactose is often mentioned as one of the first difficulties noticed, fats can be another, other non-gluten containing grains can also become impossible to handle. The longer and more extensive the damage, the more sensitive you're likely to become.

If you're not feeling better at all, it might be worth your while to do an elimination diet for a couple weeks. I believe what you do is take your food variety down to its bare minimum, removing all the major food allergens from your diet, then, one by one, try something in it's purest form (i.e., a hardboiled egg, glass of milk, plain cooked corn, glass of soymilk or plain edamame, etc.) and see what happens.

For me, I'm mildly sensitive to most grains, corn being the least offensive to my system, so I actually eat almost no grains at all. Thank goodness for beans, since I'm also extraordinarily sensitive to red meat, this being beef, lamb and even osterich. They have me in total cramping agony for hours :( with the total system purge :blink:. Other meats I have to be careful with, too, and they have to be VERY lean or forget it. And lastly, I can't eat anything cooked with heavy cream or fats, same agony reaction. It took me some time to figure all these things out, but when everything is going well, I feel better than I have in over 15 years.

Link to comment
Share on other sites
Guest jhmom

It sounds like to me what you are describing is LUPUS or as you said some sort of autoimmune connective tissue disorder.

I know for myself after being gluten-free for over a year I continue to have GI problems but I KNOW when I ingest gluten, it's more like a daily struggle for me. I too have a high positive ANA and have learned that Lupus can affect the GI tract and Celiac & Lupus can be related. I also have hypothyroid (controlled for several years now) and Raynaud's.

I do hope you find some answers soon. Have you seen a Rheumy yet? If it were me that is the next doctor I would make an appt with.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



tom Contributor

Try totally dairy-free for a couple days.

I got a ton better w/ gluten-free, but also excluding dairy made me glad to be alive.

Open Original Shared Link

I've only heard of 2 margarines w/out whey - one is Nucoa. And sodium caseinate shows up too often in products that are lactose-free and called "non-dairy". They are NOT non-dairy.

It's worth a shot - i noticed a difference in 1 day dairy-free and felt WAY better by day 2. This was after 10 mos gluten-free.

Link to comment
Share on other sites
marielynor Newbie

Thanks again to those who replied. I think I will try eliminating dairy, because I do have stronger reactions when I consume dairy, or at least milk and ice cream. I just can't stop wondering why I felt the best when I was practically eating ONLY cheese.

And, to answer whether or not I've seen a rheumetologist, yes, many times actually. And, after many tests, she pretty much ruled out lupus. She was the one who suggested it might be celiac.

I'm so confused. And nervous. I'm going to Germany in two weeks and more than anything, I want to feel okay while I'm there.

Anyway, thanks again.

Link to comment
Share on other sites
baldridgem Rookie

For those of us that are not improving on the gluten-free diet I

recomend the Specific Carboydrate Diet. It excludes

starches and sugars. It is strict.It works!!MB

Link to comment
Share on other sites
tom Contributor

Interesting that you mention cheese. I recently found that the origins of the words casein and cheese are identical in latin et al.

Maybe it's only the lactose for you. You can just take the lactase pill and not even further change your diet.

In Germany you'll want to bring something like this. Open Original Shared Link

And a couple other potentially helpful links:

Open Original Shared Link

Open Original Shared Link

Elsewhere someone wrote:

"In Germany there are healthfood stores whose signs include the word

"reformhaus." In them, gluten-free products are shelved together. Most

large cities have several (at least), as do most smaller cities and towns,

but the selection in the latter are smaller."

Wish i was going to europe . .. . .. .

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
      120,496
    • Most Online (within 30 mins)
      7,748

    JamesDavid
    Newest Member
    JamesDavid
    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. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal 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.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
    • 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...