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

Newly Diagnosed & Anxious

EmilyT
 Share

Recommended Posts

EmilyT Newbie
EmilyT
Posted

Hi everyone,

 

I'm a 29 year old woman from the UK who has recently tested positive for coeliac antibodies on a blood test. I'm awaiting a biopsy & I'm really struggling with worrying about the related diseases caused by coeliac. Hoping to have a bit of a ramble & see if anyone can offer a different perspective please. 

 

I've been having GI symptoms ever since a really bad case of norovirus in December. Had a few trips to my GP which eventually lead to the positive coeliac blood test. I'm now waiting for a biopsy & have very unpleasant GI symptoms (bloating, loose stools, indigestion, abdominal pain). 

 

My main concern at the moment is the increased risk of other serious things like cancers (particularly the T cell lymphoma with poor prognosis), MS, and osteoporosis. But I'm mostly concerned about cancer. I have had health anxiety following my mum's cancer diagnosis in my teens & I've worked incredibly hard for years to overcome this. So it feels very strange that after all those years of worrying & overcoming my health anxiety that something is actually wrong with me! I have definitely lapsed back into old ways of catastrophic thinking & I'm just really struggling with feeling like I am bound to have lymphoma or will get it in the future. 

 

Does anyone have any info please on how likely cancer is as a coeliac? I've read lots of conflicting things & hoping for a bit of perspective on this. Apologies for coming across dramatic at all or scaring anyone else! My biopsy is thankfully only a few weeks away & I really can't wait to cut the gluten and feel in control of my health again. 

 

Thanks in advance,

 

Emily x

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

Celiac.com Sponsor (A8-M):


EmilyT Newbie
EmilyT
Posted
  • Author

Would like to add that I have also experienced (inconsistent) low iron & folic acid over the past 10 years or so. I have 6 monthly blood tests to check they haven't dropped. Weirdly they aren't always low & I only take moderate over the counter supplements, unless they are very low.

But if coeliac is confirmed via biopsy I'm not convinced that it's only been since the norovirus in Dec. I do wonder if this may be behind those odd blood tests for all those years too (which, in turn, concerns me about all those years of damage!). 

Emily x

trents Grand Master
trents
Posted

EmilyT, lymphoma of the small bowel is 4x more common in the celiac population than it is in the general population but the rate is still pretty low. But with the family history your anxiety is understandable. 

How far out is your endoscopy/biopsy? I'm sure you realize that you must continue to consume regular amounts of gluten until that procedure is done.

Cany you share how high your antibody test scores were? Please include a reference range for positive v. negative as different labs use different standards. It has been common in the UK during the pandemic years to grant a celiac diagnosis without biopsy if the tTG-IGA antibody score was 10x normal or greater.

EmilyT Newbie
EmilyT
Posted
  • Author
9 minutes ago, trents said:

EmilyT, lymphoma of the small bowel is 4x more common in the celiac population than it is in the general population but the rate is still pretty low. But with the family history your anxiety is understandable. 

How far out is your endoscopy/biopsy? I'm sure you realize that you must continue to consume regular amounts of gluten until that procedure is done.

Cany you share how high your antibody test scores were? Please include a reference range for positive v. negative as different labs use different standards. It has been common in the UK during the pandemic years to grant a celiac diagnosis without biopsy if the tTG-IGA antibody score was 10x normal or greater.

Thank you very much for your reply, that's very kind of you.

I forgot to mention that my mum's cancer was breast cancer so nothing related to lymphoma & no other family history except my Dad's type 1 diabetes (he's also being tested now for coealic in case). 

My blood test results say IgA 19U/mL and the only other numbers I can see are 0.00 - 7.00U/mL.


My biopsy on the NHS is around 6 weeks (already been waiting 3) but I am very tempted to go private. I have a consultation with a private gastroenterologist this Thursday & will likely book the endoscopy with him sooner.

And yes, thank you I am aware about continuing to eat gluten. I've been eating gluten in at least 2 meals per day.

The 4x more likely risk of lymphoma is what I've read so thanks for confirming. I'm aware this is 4x a very small number, so I know I need to be a bit more rational!

Thanks again. 

 

knitty kitty Grand Master
knitty kitty
Posted

@EmilyT, welcome to the forum!

I understand your concern about cancer and Celiac Disease.  

Studies have shown high dose Thiamine (Benfotiamine) to have anticancer effects.  

Correcting nutritional deficiencies is important for us due to the malabsorption that occurs as a consequence of Celiac Disease.  

Discuss with your doctors and nutritionist the importance of supplementing in order to boost absorption of essential vitamins and minerals.  

References:

High Dose Vitamin B1 Reduces Proliferation in Cancer Cell Lines Analogous to Dichloroacetate

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3963161/

Thiamine mimetics sulbutiamine and benfotiamine as a nutraceutical approach to anticancer therapy

https://pubmed.ncbi.nlm.nih.gov/31810115/

cristiana Veteran
cristiana
Posted

Hi Emily

I'm a coeliac based in the UK, and was diagnosed eleven years ago.

My mum was diagnosed with breast cancer on my son's fifth birthday, two years before.  The strange thing is that I have never put two and two together, but perhaps it added to my health anxieties post-diagnosis, of which there were many.  I had a lot of odd symptoms running up to my diagnosis, and then beyond, things like numbness, tingling, rib pain, hip pain, hallucinations on waking, painful bloating, back pain, even one episode of double vision. As a seasoned health anxiety sufferer, the list of things I diagnosed myself with was very long indeed.  Once I saw a consultant about something else and he actually asked me if I worked in healthcare, I seemed to know a lot about it! The good news is that things really began to settle down once my antibodies came down, and also once my blood iron and B12 levels were better. 

As regards that Lymphoma, try not to worry about getting that particular cancer,  it is still low in coeliacs. Once you are diagnosed, coeliacs get annual NHS  blood tests and follow-up reviews with a gastroenterologist which will help spot anything amiss.  

I don't blame you for going private with your endoscopy, it will be nice to get it behind you.  My one bit of advice for that is to make the most of eating all the things you enjoy that contain gluten (my thing was McVitie's Penguins!)

Join Coeliac UK when you have your diagnosis confirmed, they have a great app and food and drink guide which will help you when you go out shopping.   

I hope all goes well, do come back if you have any questions re: the system in the UK.

Cristiana

 

 

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
 Share
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...