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

Concerned I have Celiac


Louise21

Recommended Posts

Louise21 Rookie

Hi, 

The doctor asked me to book a routine phone call but I have to wait until January 31st to discuss these results. 

I stupidly read the results on the NHS App which say Lab Result: T-transglutaminase

Ani-tissue transglutase lev: (this is left blank for some reason)

 

I'm not sure if that's because they don't want to show the result, but they've already shown me everything else that I've googled. 

It also said Lab result: Serum C reactive Protien level : 6 mg/L (normal is between 0-5)

My IgA is 2.20 g/L so that's normal

(0.7-4) 

 

Any help is appreciated to put my mind at ease whilst I wait. I have very few symptoms but I understand not everyone with Celiac get bad symptoms

Thank you


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



Celiac.com Sponsor (A8-M):



trents Grand Master

"C reactive protein level" is a test to measure inflammatory processes in your body. It is weakly positive in your case. This could be caused by a number of inflammatory processes.

The one test that would be specific for celiac disease in the data you have supplied is the Anti-tissue transglutaminase was left blank for some reason.

The IGA must be referring to total IGA? which is normal. If total IGA is low it can skew individual IGA test results (such as the one they left blank) downward toward the negative range.

Sorry I can't be of more help than that but there just is insufficient data to say more.

Louise21 Rookie

That's ok, I understand there's not much to go on. I appreciate you taking the time to explain.

Maybe they will suggest retaking a blood test if that's the case or looking into something else. I stopped taking my lansaprozole for two weeks before the blood test so might continue to not take that until I've spoken to a doctor. It may not necessarily be Celiac from what they've written on my app but I wish they would just tell me sooner rather than later. 

Im struggling with mild to moderate constipation and reflux, since September and I eat the same foods I've always eaten, the only difference is I had some time off sitting down a lot with a broken foot (Stress fracture) . 

trents Grand Master

Until all testing is done for celiac disease you would need to continue eating regular amounts of gluten or you would invalidate the test results.

Yes, inactivity and/or pain meds that you might have been taking for the broken foot will certainly increase the chances of developing constipation.

How long have you been on lansaprozole?

Louise21 Rookie

Hi,

 

Thank you, I'm still eating Gluten at the moment. 

I took naproxin, along with Lansaprozole way back when I hurt my shoulder in 2021

When I unknowingly broke my foot December 2021, I was taking The Naproxin and Lansaprozole on and off into 2022. I stopped taking it in March 2022 when I realised it affected bone healing.

I started experiencing the constipation, reflux in late August 22. I got represcribed the Lansaprozole in October I think but was concerned about taking it long term for reflux so that's when I got the blood test done after two weeks no Lansaprozole 

Do you think I should try to phone the doctors to speak to someone sooner than the 31st? The sooner I talk the sooner I am refered! I'm getting anxious that I have to wait that long for a definite answer, but I also know that's a safe time for me to talk. If I change it, they will have to call me at work where there's hardly any signal. 

 

 

trents Grand Master

There is research that links long term therapy with acid blockers like Lansaprozole to the development of celiac disease.

Yes, I would certainly make an effort to communicate with your doctors as soon as possible, particularly about the missing field value for T-transglutiminase and possibly getting an earlier date for the endoscopy/biopsy. Is it taboo at your work place to use the house phones for medical communications?

Louise21 Rookie

Not sure how long I was on the acid blockers in total, but that could be a reason. My brother has crohns or colitis, that makes it more likely. I know that Celiac can run in families, so maybe different inflamation diseases do too! 

I will definetly try call tomorrow. I can't use a work phone because of where I work


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



Celiac.com Sponsor (A8-M):



Louise21 Rookie

So I've had my results back from my doctor and tbh I'm quite frustrated, she said the only thing of concern is that my iron levels are borderline. 

That still does not solve my constipation, reflux, Flatulance, bloating that I've had since end of August. I do take occasional Laxatives but I can only take them once or twice a week due to the bad side affects they cause. 

Recently I was so anxious about waiting for the results that the pasta I ate went though me so quickly that it was undigested. 

She said come back in a month and if it's still happening she might refer to gastroenterologist. 

I don't think it's anything to do with diet because, I have not changed my diet, if anything I'm healthier than I used to be. 

I am thinking of trying peppermint capsules if things don't improve and I'm writing down a daily diary 

trents Grand Master

So, the Anti-tissue transglutamase level was negative?

Louise21 Rookie

Yes apparently, I have no idea why it was on my consultant notes. In fact I have no idea why they bother putting the serum c protien in the notes if it's not a concern. 

Maybe it doesn't make a difference what they put in the "consultant notes" vrs "test results section". 

trents Grand Master

I don't have a good feeling about the serum testing you had done initially. It just doesn't seem to me they knew what tests to order.

Louise21 Rookie

I'm not sure, they said they were ordering tests to do with stomach issues. I will ask in a months time I guess and go from there 

Wheatwacked Veteran

 

The aspect of Celiac Disease that is often diregarded by doctors is malabsobtion syndrome. There are some 20 essential vitamins and minerals that are absorbed in the small intestine that can be affected and if one is, so may be others, each with its own set of symptoms. That your brother is also experiencing symptoms often comorbid with Celiac increases your probablity. Newer studies have raised the possibility of a first degree relative, parent or sibling, from 10% to 44%. It would be good to have your brother also go through testing because getting a correct diagnosis of Celiac can take on average 10 years and overall it seems to be Highly Dependant on the doctor and serendipity.

Many of the vitamins affected have blood plasma levels tightly controlled by homeostasis so the blood tests may be ok, but they do not indicate true cellular statis. Potassium is a good example. Most people have sufficient blood levels, yet potassium deficiency is a concern to many nations and the World Health Organization.

PPI + Celiac Disease = disaster

3 hours ago, Louise21 said:

of concern is that my iron levels are borderline. 

Quote

Proton Pump Inhibitors and Fracture Risk: A Review of Current Evidence and Mechanisms Involved

The current review suggests that the relationship between long-term PPI use and fracture is still unclear; however, the risk is more apparent in patients with strong secondary risk factor of osteoporosis, such as renal dysfunction. The possible mechanisms of fractures induced by PPIs include hypersecretion of histamine and hyperparathyroidism due to hypergastrinemia, as well as mineral and vitamin B malabsorption due to hypochlorhydria. 

 

trents Grand Master

Louise, the acid blocker you have been taking likely contributed to the borderline anemia you have. To be absorbed well, iron needs an acidic environment in the gut. Also, the borderline anemia may be related to B12 deficiency caused by celiac disease. B12 is necessary for assimilation of iron.

Louise21 Rookie

Thank you, for all that information, I will bring it up next time I see my Dr. I will push to be refered to check both the reflux and constipation cause. But for now the Dr wants me to take the PPI, so I will buy some over the counter Iron tablets with B12, She mentioned they have less sidaffects. 

trents Grand Master

Iron supplementation can contribute to constipation so watch for that and can be hard on the stomach. You might want to look for a buffered iron product.

Louise21 Rookie

Yes I think that was why the Dr didn't want to prescribed me iron tablets that weren't over the counter ones. 

I will look into it. I will just have to stop taking them if it makes everything worse. How do you know it is buffered? I'm looking at 'Vitabiotics Ultra iron with Vit C, B12' or there is another one on the same website called ' Fereglobin capsules, with folic acid, B12'

 

trents Grand Master
(edited)

It will tell you on the packaging if it is buffered. "Gentle iron" is one such product but it may not contain C and B12. You can always add those in with separate supplements, however. The purpose of the vitamin C is to create an acidic environment to increase assimilation of the iron. Coffee or orange juice would do the same thing.

Edited by trents
Wheatwacked Veteran
3 minutes ago, trents said:

create an acidic environment

Kind of defeats the purpose of PPIs - to reduce the acid put out by the stomach's Hydrocholoric Acid producing proton pumps? I think originally PPI were used to give the stomach lining a chance to heal from ulcers but nowadays you can get them over the counter so you can eat Pizza. I prefer Alka Seltzer and foods high in omega 3.

trents Grand Master
30 minutes ago, trents said:

It will tell you on the packaging if it is buffered. "Gentle iron" is one such product but it may not contain C and B12. You can always add those in with separate supplements, however. The purpose of the vitamin C is to create an acidic environment to increase assimilation of the iron. Coffee or orange juice would do the same thing.

Maybe not "Gentle Iron" but "Slow Iron". The adjectives should give it away.

trents Grand Master
19 minutes ago, Wheatwacked said:

Kind of defeats the purpose of PPIs - to reduce the acid put out by the stomach's Hydrocholoric Acid producing proton pumps? I think originally PPI were used to give the stomach lining a chance to heal from ulcers but nowadays you can get them over the counter so you can eat Pizza. I prefer Alka Seltzer and foods high in omega 3.

Yes,. OP is juggling a number of issues that are likely related but the solutions for each one may be in conflict.

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

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,198
    • Most Online (within 30 mins)
      7,748

    Westshad
    Newest Member
    Westshad
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.2k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Because you have significantly reduced your gluten intake over a considerable amount of time, it is likely that you will test negative on the antibody tests. However, if the $112 for the Quest test is not a burden, it wouldn't hurt to try. It tests for total IGA (to ascertain if you are IGA deficient) and tTG-IGA. If total IGA is deficient, it can result in false negatives in other IGA tests. The tTG-IGA is the single most popular test ordered by physicians. The Quest test is not a complete celiac panel by any means (refer to the linked article above) but it might be a good place to start. Personally, I think you know enough to conclude that you need to get serious about avoiding gluten, whether you have celiac disease or NCGS. Human nature being what it is, however, many people seem to need an official diagnosis of celiac disease in order to stay on the bandwagon. Otherwise, they seem to rationalize cheating on the gluten-free diet. And there is this misconception out there that NCGS is inconvenient and uncomfortable but not harmful so it's okay to cheat. The more we learn about gluten-related disorders the more they seem to not fit into our neat little black and white categories. By the way, celiac disease is not a food allergy. It is classified as an autoimmune disorder.
    • More2Learn
      These responses are all extremely helpful, ty.  Really good reminder about omega 6.  I also know I'm low in zinc; I took the zinc test where I drank it on a spoon and couldn't taste it.  To that end, I try to eat a lot of oysters.  I do think it would be a good idea to get the blood test.  Two questions: 1-  Is there any reason you wouldn't recommend that I just buy and take a test like this as a first step? 2- I've been somewhat gluten free since ~Jan 2023 (technically organic, gluten free, soy free, light on dairy).  I eat a lot of meat, vegetables, rice -- a common breakfast for me is three eggs and a sausage link, and I can't remember the last time I had a sandwich or bread.  However, because in my mind I didn't think I had an allergy, and I more was doing gluten free to avoid artificially iron-enriched foods, I do make exceptions.  I'll eat breaded calamari.  When my Dad visits, I split mozzarella sticks with him because he loves them so much.  I'll eat the "gluten sensitive" items at a restaurant and if they asked, "is cross contamination ok?",  I always said yes.  Based on that, since I never probably fully eliminated gluten, but it was significantly reduced... is that good enough to take the blood test?  Because the pain in my side gets SO bad (really sometimes I can't function, and I absolutely thought I was dying), I am hesitant to do the gluten challenge.  Would it make sense to take the test, and if it's negative, then consider doing the challenge and seeing if I can deal with eating the bread every day? Thanks again!
    • Yaya
      For me, with osteoporosis, Celiac and more than 1 heart condition, the slower, safer route is preferable.  I'm on 5 meds per day.  Too much of anything can disturb absorption of this or that. Have a Happy Thanksgiving.  I'm gone for a few days.  
    • Wheatwacked
      It took me 2015 to 2021 at 10,000 IU a day to get to 80 ng/ml. In 2019 I was still only 47 ng/ml The highest it has reached is 93.  Tested every 3 months.     While a one time massive dose can be used to quickly raise vitamin D levels, its effects only last three months.  Because vitamin D is stored in fat, an obese person would require more to raise blood level.     Effect of High-Dose Vitamin D Supplementation on Volumetric Bone Density and Bone Strength   The point of higher vitamin D is for the mental health and immune system requirements.  Also this study included supplementing calcium.  "Research suggests that women with low levels of vitamin D have a higher risk of breast cancer. Vitamin D may play a role in controlling normal breast cell growth and may be able to stop breast cancer cells from growing." This information is provided by Breastcancer.org. https://www.breastcancer.org/risk/risk-factors/low-vitamin-d-levels Higher vitamin D levels have been consistently associated with reduced risks of colorectal cancer https://www.cancer.gov/about-cancer/causes-prevention/risk/diet/vitamin-d-fact-sheet  
    • RMJ
      You can search here for certified gluten free olive oil GFCO productfinder
×
×
  • Create New...