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:
    Support Our Content
    eNewsletter
    Donate

Ttg slowly rising, occult blood in stool, doctors ignoring?

Complex Celiac

Recommended Posts

Complex Celiac Newbie
Complex Celiac
Posted

I am so frustrated right now!! I have a stool test with occult blood - with celiac, a family history of stomach cancer and polyps, and a red meat based diet - also a risk factor for colon cancer. My allergist looks at it and says it's essential my GI repeat the test, this time avoiding red meat before in case it's a false positive. Of course, if it's a real positive, a colonoscopy is needed. I fax my results to my GI, a week later, I get a voice message "he says there's no need to repeat the test." Also, apparently no need for a colonoscopy either. 

My ttg continues to slowly increase too. We are now so meticulously gluten free that we all even shower first thing when coming home in case we have somehow picked up gluten that's getting transferred to the food. Every product - including shampoos, soap, toothpaste, cleaners, paper towels (the glue to the roll would be the issue), every little thing - is verified as gluten-free. I eat zero processed food - one BBQ sauce that is verified gluten-free both by the manufacturer and running our own test to 5 PPM. So it can't be gluten, I'm quite sure. But it's climbed from 2.8 to 7.5 slowly. Any ideas??? To me, it's most likely a second autoimmune disease, but I've had basic autoimmune tests done, and good luck convincing any doctor I need more. LOL

 
I should also add - I haven't eaten a meal outside of my home for over a year, so that can't be it. 

Help!!! I'm open to ideas!!
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

Get another opinion from another medical doctor?  

Complex Celiac Newbie
Complex Celiac
Posted
  • Author

I'd love to, but there's a 9-12 month where I live to see a different GI as a new patient, which is kind of prohibitive of getting the care when it's needed. Apparently, I can do this test through a GP, if I can find one who will do it. 

 

But the ttg thing....any ideas? Anyone? Please? :)

Gemini Experienced
Gemini
Posted
9 minutes ago, Complex Celiac said:

I'd love to, but there's a 9-12 month where I live to see a different GI as a new patient, which is kind of prohibitive of getting the care when it's needed. Apparently, I can do this test through a GP, if I can find one who will do it. 

 

But the ttg thing....any ideas? Anyone? Please? :)

In the absence of gluten in your diet, rising tTg is most likely due to another autoimmune disease, as you already mentioned.  It is sometimes hard to test for them because they can behave like Celiac......they can show negative on a test, even if you have symptoms.  You should be tested for Sjogren's Syndrome, Type 1 diabetes, liver disease, Hashi's thyroid disease.......these are a few others that occur frequently with Celiac.  I know finding a doc who can help is sometimes harder to do than treating a disease!

I would agree that having another stool test done is important because if you ate red meat within 3-4 days of having the test done, it can result in a false positive.  Then, you can see if a colonoscopy is needed.  Or, with your family history, you could harass your GI doc for a colonoscopy until he agrees to do one. It is unusual for them NOT to want to do one if you have a positive on the stool test. In the US, you do not need a referral  to a GI for a colonoscopy.  You can go to any clinic and have one, if medically needed.  If you live in the US, that is an option for you.

BTW...the glue in paper products is not a problem with Celiac Disease. There is no gluten in paper glue.  That is an old Celiac myth.  I applaud the lengths you have gone to be really gluten free but that is a non-issue.

Complex Celiac Newbie
Complex Celiac
Posted
  • Author

I'm currently living in Ontario, Canada, the Greater Toronto Area. Getting a colonoscopy is far more difficult than in the U.S. I'm quite familiar with both systems, both countries have good and bad in health care, but the big flaw here is you can't do anything without referrals. You need a referral from a GP for a specialist - and then a referral from specialists for tests. The system may work if you have a great GP who has known you for years and there's a two way trust, for the rest of us, it isn't so great. Thankfully, naturopaths have a lot of power here. Without tests through my ND, I'd be in serious trouble - even more so!

 

Totally agree on the autoimmune testing! But my GI doesn't. Next step is to contact the naturopath and see what she can do. I agree, other than something else autoimmune, what can it be?

Gemini Experienced
Gemini
Posted
14 hours ago, Complex Celiac said:

I'm currently living in Ontario, Canada, the Greater Toronto Area. Getting a colonoscopy is far more difficult than in the U.S. I'm quite familiar with both systems, both countries have good and bad in health care, but the big flaw here is you can't do anything without referrals. You need a referral from a GP for a specialist - and then a referral from specialists for tests. The system may work if you have a great GP who has known you for years and there's a two way trust, for the rest of us, it isn't so great. Thankfully, naturopaths have a lot of power here. Without tests through my ND, I'd be in serious trouble - even more so!

 

Totally agree on the autoimmune testing! But my GI doesn't. Next step is to contact the naturopath and see what she can do. I agree, other than something else autoimmune, what can it be?

Oh, I totally understand both systems also and I agree that depending on the problem, it can either be easy or a nightmare to obtain what you need.  Some health care plans here in the States depend heavily on referrals and it really is a PITA!  But, really......the GI doesn't think you need a colonoscopy after a positive stool test with your family history?  I would agree that you need to use whatever medical people you can get help from.  I use a private MD  here for my thyroid because I could not find an insurance backed doc who was willing to think outside the box as far as treatment was concerned. My thyroid would not be stable now if I went through the mainstream system.

Can you obtain a referral to a rheumatologist?  They generally know the testing for other AI conditions.  It's usually all blood work.

Complex Celiac Newbie
Complex Celiac
Posted
  • Author
9 hours ago, Gemini said:

Oh, I totally understand both systems also and I agree that depending on the problem, it can either be easy or a nightmare to obtain what you need.  Some health care plans here in the States depend heavily on referrals and it really is a PITA!  But, really......the GI doesn't think you need a colonoscopy after a positive stool test with your family history?  I would agree that you need to use whatever medical people you can get help from.  I use a private MD  here for my thyroid because I could not find an insurance backed doc who was willing to think outside the box as far as treatment was concerned. My thyroid would not be stable now if I went through the mainstream system.

Can you obtain a referral to a rheumatologist?  They generally know the testing for other AI conditions.  It's usually all blood work.

I will try for a referral. I saw a rheumatologist a year or so ago, but they did absolutely no blood work. I'd make sure I got it done this time! If not, I will see if I can order through my ND. I'd have to pay a lot more I suspect, but it's worth it!!

Yeah, in Ontario, there's no options outside of the system for MDs. No ability to see a specislist and pay if your GP doesn't agree you need a specialist. Quebec is different. They allow you to pay and see doctors outside of the system. When they did that, they went from the worst wait times in the country to the best!

Yeah, a colonoscopy probably makes sense, but we will see....

 

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,283
    • Most Online (within 30 mins)
      7,748
    CSK 157
    Newest Member
    CSK 157
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Dora77
      Ocd making gluten fears unmanageable. Need advice

      By Dora77 · Posted

      Sorry for the long post. I’m 18, and I was diagnosed with celiac disease and type 1 diabetes (T1D). My transglutaminase IgA was >128 U/mL, EMA IgA positive twice, and I’m HLA-DQ2 and DQ8 positive. I’ve been completely asymptomatic since diagnosis, even when I cheated with gluten sometimes in the past and used to eat out(2-5 years ago) I don’t get the typical celiac reactions, which makes it really hard to know when (or if) I’ve been glutened. But for the past year, I’ve been the most strict with my diet, and that’s also when a bunch of new issues started. I eat completely glutenfree, never eat out, dont eat food that says „may contain gluten“.   Current Health Problems • Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds. Been ongoing for a year now. First noticed in the gym. • Abdominal bulge on the right side, not painful but seems to be getting slightly bigger. Doctor didn’t find a hernia on ultrasound, but it was done lying down (I’ve read those can miss hernias). Noticed it like 6 months ago, couldve been there longer. • extremely dry and mildly swollen hands (this started before I started excessive hand-washing), and bloated face. • Signs of inattentive ADHD (noticed over the past 3 years), now combined with severe OCD focused on contamination and cross-contact. • Growth/puberty seemed to started after going gluten-free. Before that I was not developing. Dont know if any of these are because of celiac as my dad doesnt have those and he is a lot less strict gluten-free then me. I also had pancreatic elastase tested four times: values were 46 (very low), 236, 158, and 306 (normal). Gastroenterologist said one normal value is enough and I don’t have EPI. Family doctor prescribed Kreon anyway (after I pushed for it), and I just started taking 1 capsule (10,000 units) with meals 2 days ago, but couldn‘t see effects yet because I’ve been constipated the last few days. Maybe because of thyroid. I don’t have Hashimoto’s. No thyroid antibodies. But I took levothyroxine for slightly low FT4 levels. My thyroid levels fluctuated between borderline low and low-normal. And recently lowered my dose so that may have caused the constipating. I probably didn’t need it in the first place, and am thinking about stopping it soon.   Current Diet Right now, I only eat a very limited set of “safe” foods I prepare myself: • Gluten-free bread with tuna or cheese • Milk and cornflakes • gluten-free cookies/snacks • Bananas (the only fruit I trust right now) I rarely eat other fruits or vegetables, because I’m scared of contamination. My dad, who also has celiac but doesn’t care about CC, buys fruits, and he might’ve picked them up right after handling gluten bread. That makes me feel unsafe eating them. Even fruit at stores or markets feels risky because so many people with gluten on their hands touch them.   My Home Situation (Shared Kitchen) We’re a family of 5. Only my dad and I have celiac. He eats glutenfree but doesn’t care about CC and sometimes (but rarely) cheats. My mom and siblings eat gluten bread at every meal. My mom is honest (so if i ask her to be cautious, she most likely would try to), but doesn’t seem to understand how serious celiac is. She: • Stopped using gluten flour • only cooks gluten-free meals (but they still heat up gluten bread and also cook gluten noodles) • Keeps separate butter/jam/jars for me • Bought me a stainless steel pan Bu we didn’t replace old wooden utensils, cutting boards, or other pans. The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes.   I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands   Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit?   Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either.   Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
    • lmemsm
      beans in dessert recipes

      By lmemsm · Posted

      I've been making a lot of black bean brownies lately because it's one of the few gluten free dessert recipes that actually tastes palatable.  I've also seen chocolate cake recipes with black beans.  Someone mentioned a cookie recipe using lentils in place of flour.  Just wondering if anyone's run across any tried and true recipes using beans, lentils or peas for desserts?  I've seen a lot of recipes for garbanzo flour but I'm allergic to garbanzo beans/chickpeas.  Was wondering if adzuki or pinto beans might be useful in replacing some or all of the flour in baking.  Since gluten free flours can be crumbly was hoping the beans might help produce a better, less crumbly consistency.  Any recommendations for recipes?  Thanks.
    • lmemsm
      Gluten free/ non dairy , low calorie pudding

      By lmemsm · Posted

      I've seen a lot of recipes for chia pudding, so I decided to make some with chia, water, cocoa and honey.  Didn't like the taste, so I added ground sunflower and ground pumpkin seed to it.  It tasted okay, but came out more like frosting that pudding.  I used to make pudding with tapioca starch, milk powder, water and sugar.  It came out very good but I haven't figured out what to use to replace the milk powder to make it dairy free.  Most starches will work in place of tapioca starch but quantity varies depending on the type of starch.  If I didn't add enough starch to get a pudding consistency, I'd add gelatin as well to fix it.  Avocado and cocoa makes a good dessert with a pudding like consistency.  Unfortunately, I have a bad reaction to avocados.
    • lmemsm
      Finding gluten free ingredients

      By lmemsm · Posted

      Seems like when I find a gluten free product I like, the producer stops manufacturing it and then I have trouble finding a new gluten free source for it.  What's worse, I've been contacting companies to ask if their products are gluten free and they don't even bother to respond.  So, it's making it very hard to find safe replacements.  I was buying teff flour at nuts.com and they no longer carry it.  I noticed Naturevibe has teff and soy flour.  However, I can't get a response as to whether their flours are safe for someone with celiac.  Can't get a response from Aldi if their peas are safe for someone with celiac either.  I know Bob's Red Mill has teff flour but was hoping to get a large quantity.  I've been using up the 20 ounce Bob's Red Mill teff flour too quickly.  Does anyone know of a good source for teff or soy flour?  Any recommendations where to get gluten free beans, peas or lentils?  I found some packages of gluten free beans at Sprouts but not much variety.  I've also been looking for lentil elbow macaroni and it seems like no one is making that now that Tolerant was bought out.  Any suggestions for safe sources for these types of ingredients.  Thanks.
    • chrish42
      Doctors and Celiac.com

      By chrish42 · Posted

      All I can say is this site is great!
×
×
  • Create New...