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!

Can't Figure Out Source Of Symptoms


sfc83

Recommended Posts

sfc83 Rookie

I am 11 months gluten free after being diagnosed last August, and after feeling a lot better over the last few months, I am beginning to have symptoms again. I have a completely gluten free kitchen (shared only with my wife), and have 100% avoided eating at restaurants since a cross contamination episode in March. I eat the following foods on a daily basis, and never stray from my diet:

 

Breakfast:

 

- Banana

- Kiwi

- Hard boiled eggs (without yolk)

- So Delicious Dairy Free Coconut Greek Yogurt

- Coconut Oil

 

Lunch

- Three turkey  and avocado sandwiches on Canyon Bakehouse 7 Grain Bread. The turkey brand is Applegate Organics (marked gluten free)

- Raspberries

- Blueberries

- Glutino Strawberry Breakfast Bar

- Orange

 

Dinner

- Chicken breast or Tilapia

- Eden Organic Millet

- Carrots

- Zucchini

- Coconut Oil

 

I also take the following supplements:

 

- Designs for Health L-Glutamine (3/4 teaspoon twice per day)

- Enzymedica Digest Spectrum (before meals)

- Source Naturals Vitamin D Supplement (marked gluten free)

 

Does anyone see anything on this list that warrants a closer look? I do eat about 50 grams of fiber per day, which may be excessive. It is mostly soluble fiber, however, as I have IBS as well.  I have started to look into household products as well, and my wife has replaced most of her makeup with gluten free brands. My symptoms are mostly digestive, with lower abdominal soreness and some anxiety/disruptive sleep. Any insight would be appreciated.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



GottaSki Mentor

Good Morning-

 

Your diet is very healthful and I can understand the frustration as I had many setbacks eating very healthy foods.  The thing that stands out to me is there are quite a few high histamine foods.  Banana, eggs, berries, avocado, processed turkey (applegate is a fantastic brand, but may not be safe if histamine is an issue).

 

The main enzyme used to regulate histamine in our bodies is created in the small intestine -- celiac disease can disrupt this production.

 

Here is a good overview of Histamine Intolerance:

 

Open Original Shared Link

 

You obviously know exactly what you are eating...but if you aren't already...also track symptoms and sleep patterns.   Finding exactly the correct foods for you until you are completely healed can be tough.

 

Hang in there :)

Link to comment
Share on other sites
dilettantesteph Collaborator

Hi.  I experienced ongoing glutening symptoms despite a gluten free diet at first as well, despite an initial significant improvement.  Then my GI doctor told me that some celiacs are more sensitive to trace contamination than others and can even have problems with foods labelled as gluten free.  Since then there has been a study published of this fraction of celiacs which you can read here: Open Original Shared Link

 

Do your symptoms feel like the glutening symptoms you had before you were diagnosed, or do they feel like something new?  There are a whole lot other options for causes of symptoms other than gluten, like histamines as pointed out above.  Others include other food intolerances, Lyme disease, cancer, other immune conditions, bacterial overgrowth, yeast overgrowth, and more that I considered before I finally found out about trace gluten issues.  If you think that trace gluten could be a problem for you, you could try the gluten contamination elimination diet as described in the article.  Alternately, you could try eliminating and re adding the more suspicious elements of your diet until you find which one or ones is bothering you.  That can help for food intolerances as well as gluten contamination.  I usually try to give it a week as it can take that long to heal and to build up noticeable symptoms, in my experience.

 

As a super sensitive celiac, as I look at the list of foods that you eat, I see several that would probably give or have given me symptoms.

Link to comment
Share on other sites
sfc83 Rookie

Thank you for your reply. I recently read the study below, and I have weighed trying the gluten contamination elimination diet. If this episode continues, it may be the direction I take. I consider myself to be a fairly sensitive Celiac as well, and I am curious, which foods on my list would you consider to be suspicious or have previously given you symptoms?

 

Hi.  I experienced ongoing glutening symptoms despite a gluten free diet at first as well, despite an initial significant improvement.  Then my GI doctor told me that some celiacs are more sensitive to trace contamination than others and can even have problems with foods labelled as gluten free.  Since then there has been a study published of this fraction of celiacs which you can read here: Open Original Shared Link

 

Do your symptoms feel like the glutening symptoms you had before you were diagnosed, or do they feel like something new?  There are a whole lot other options for causes of symptoms other than gluten, like histamines as pointed out above.  Others include other food intolerances, Lyme disease, cancer, other immune conditions, bacterial overgrowth, yeast overgrowth, and more that I considered before I finally found out about trace gluten issues.  If you think that trace gluten could be a problem for you, you could try the gluten contamination elimination diet as described in the article.  Alternately, you could try eliminating and re adding the more suspicious elements of your diet until you find which one or ones is bothering you.  That can help for food intolerances as well as gluten contamination.  I usually try to give it a week as it can take that long to heal and to build up noticeable symptoms, in my experience.

 

As a super sensitive celiac, as I look at the list of foods that you eat, I see several that would probably give or have given me symptoms.

Link to comment
Share on other sites
sfc83 Rookie

Thank you for your reply. I had never considered histamine intolerance, but based on the list provided, I definitely have a high histamine diet. I am currently consulting with a dietitian, so I will ask her about it. Do you know if there are digestive enzymes that may be taken to improve the tolerance of histamines?

 

 

Good Morning-

 

Your diet is very healthful and I can understand the frustration as I had many setbacks eating very healthy foods.  The thing that stands out to me is there are quite a few high histamine foods.  Banana, eggs, berries, avocado, processed turkey (applegate is a fantastic brand, but may not be safe if histamine is an issue).

 

The main enzyme used to regulate histamine in our bodies is created in the small intestine -- celiac disease can disrupt this production.

 

Here is a good overview of Histamine Intolerance:

 

Open Original Shared Link

 

You obviously know exactly what you are eating...but if you aren't already...also track symptoms and sleep patterns.   Finding exactly the correct foods for you until you are completely healed can be tough.

 

Hang in there :)

Link to comment
Share on other sites
GottaSki Mentor

 

Thank you for your reply. I had never considered histamine intolerance, but based on the list provided, I definitely have a high histamine diet. I am currently consulting with a dietitian, so I will ask her about it. Do you know if there are digestive enzymes that may be taken to improve the tolerance of histamines?

 

 

 

Good Morning-

 

Your diet is very healthful and I can understand the frustration as I had many setbacks eating very healthy foods.  The thing that stands out to me is there are quite a few high histamine foods.  Banana, eggs, berries, avocado, processed turkey (applegate is a fantastic brand, but may not be safe if histamine is an issue).

 

The main enzyme used to regulate histamine in our bodies is created in the small intestine -- celiac disease can disrupt this production.

 

Here is a good overview of Histamine Intolerance:

 

Open Original Shared Link

 

You obviously know exactly what you are eating...but if you aren't already...also track symptoms and sleep patterns.   Finding exactly the correct foods for you until you are completely healed can be tough.

 

Hang in there :)

 

 

There are a few DAO supplements out there -- they did not help me. 

 

High Histamine foods are not like gluten...it may be you can tolerate some or small quantities...but too many or certain foods within the group can cause issues.

 

I don't know if histamine is the cause of your symptoms...but you could test by removing histamine foods for a week or so to see if you improve.

Link to comment
Share on other sites
dilettantesteph Collaborator

I am 11 months gluten free after being diagnosed last August, and after feeling a lot better over the last few months, I am beginning to have symptoms again. I have a completely gluten free kitchen (shared only with my wife), and have 100% avoided eating at restaurants since a cross contamination episode in March. I eat the following foods on a daily basis, and never stray from my diet:

 

Breakfast:

 

- Banana

- Kiwi

- Hard boiled eggs (without yolk)

- So Delicious Dairy Free Coconut Greek Yogurt

- Coconut Oil

 

Lunch

- Three turkey  and avocado sandwiches on Canyon Bakehouse 7 Grain Bread. The turkey brand is Applegate Organics (marked gluten free)

- Raspberries

- Blueberries

- Glutino Strawberry Breakfast Bar

- Orange

 

Dinner

- Chicken breast or Tilapia

- Eden Organic Millet

- Carrots

- Zucchini

- Coconut Oil

 

I also take the following supplements:

 

- Designs for Health L-Glutamine (3/4 teaspoon twice per day)

- Enzymedica Digest Spectrum (before meals)

- Source Naturals Vitamin D Supplement (marked gluten free)

 

Does anyone see anything on this list that warrants a closer look? I do eat about 50 grams of fiber per day, which may be excessive. It is mostly soluble fiber, however, as I have IBS as well.  I have started to look into household products as well, and my wife has replaced most of her makeup with gluten free brands. My symptoms are mostly digestive, with lower abdominal soreness and some anxiety/disruptive sleep. Any insight would be appreciated.

 

You asked me which ones I reacted to, and it's a long list.  I have a terrible time with so delicious, coconut oil, Glutino produces, and many supplements.  My daughter reacted to Applegate hot dogs so I didn't even try them as she is a lot less sensitive than I am.  Eden organic millet I did better with when I washed it well.  If I were to pick the most likely candidate from your list that I would eliminate first, it would be the gluten-free bread, followed by the so delicious yogurt.  I do need to follow this up with the fact that I am extremely sensitive and the vast majority of celiacs don't have problems with these products.  Good luck to you and I hope you get to the bottom of it and let us know.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



sfc83 Rookie

Thank you for your reply. I appreciate your insight and hope to get to the bottom of it as well.

You asked me which ones I reacted to, and it's a long list.  I have a terrible time with so delicious, coconut oil, Glutino produces, and many supplements.  My daughter reacted to Applegate hot dogs so I didn't even try them as she is a lot less sensitive than I am.  Eden organic millet I did better with when I washed it well.  If I were to pick the most likely candidate from your list that I would eliminate first, it would be the gluten-free bread, followed by the so delicious yogurt.  I do need to follow this up with the fact that I am extremely sensitive and the vast majority of celiacs don't have problems with these products.  Good luck to you and I hope you get to the bottom of it and let us know.

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,501
    • Most Online (within 30 mins)
      7,748

    fine one
    Newest Member
    fine one
    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

    • SuzanneL
      It was tTG IGG that was flagged high. I'm not sure about the other stuff. I'm still eating my normal stuff. 
    • 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.
×
×
  • Create New...