Jump to content
  • 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

If The Diet Isnt Working........


Tasha2004

Recommended Posts

Tasha2004 Contributor

Just returned from a trip to the primary care dr. with my Mom.

Mom has all the signs that gluten is creeping in somewhere after 20 years on the diet.

The doctor said there is no way to test to see if this is happening, despite my having articles which said otherwise. I suggested we move Mom back to a gastro, as she had not seen one for awhile anyway.

I expected the doctor to say that very thing, but had articles on refractory sprue and other situations which suggested to run some antiboday tests.

So, am venting a bit though the doctor was fairly reasonable after I let her know I had found legit information on this very thing.


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor
Just returned from a trip to the primary care dr. with my Mom.

Mom has all the signs that gluten is creeping in somewhere after 20 years on the diet.

The doctor said there is no way to test to see if this is happening, despite my having articles which said otherwise. I suggested we move Mom back to a gastro, as she had not seen one for awhile anyway.

I expected the doctor to say that very thing, but had articles on refractory sprue and other situations which suggested to run some antiboday tests.

So, am venting a bit though the doctor was fairly reasonable after I let her know I had found legit information on this very thing.

I would get the antibody testing as a starting point and also check and make sure that any thing she comes in contact with is gluten-free. I am trusting you have eliminated gluten from toiletries and shampoos, lotions, hair dye, are careful with pet foods etc. In addition are there any hobbies she has taken up? Glues, paints, plasters, clays and such can be hidden gluten sources as can drywall dust if she is remodeling. She could also have developed a secondary intolerance like lactose, casein or soy.

I hope you get some answers soon.

Tasha2004 Contributor

We're really trying to think of everything. My Mom had bought a weird Chinese tea, she takes tons of vitamins and we are even questioning the contents of a microwave bag you heat up for muscle pain.

We're looking hard......

Now we're having a rough time getting an appointment with the gastro.

AndreaB Contributor

It's expensive but have you thought of enterolab. www.enterolab.com You don't have to be on gluten to take the test and if gluten has been sneaking in her levels will still be up there. They also test for dairy, soy, egg, and yeast.

Tasha2004 Contributor

Andrea it's a good idea, but we dont have the money and today I had a hard time getting her to pay 75 cents for a can of green beans..............eeesh.

aikiducky Apprentice

Is it a microwave bag of some kind of seeds that you heat up for joint or muscle pain? That could very well be filled with wheat, they often are!

Pauliina

Tasha2004 Contributor

Pauliina: Yes, it is, and the stupid company wont write me back and let me know what their bag is filled with. Indeed it could be wheat or something with wheat germ oil.


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



Celiac.com Sponsor (A8-M):



penguin Community Regular

I thought most of those were made from buckwheat or feed corn :huh:

Both are gluten-free...

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,919
    • Most Online (within 30 mins)
      7,748

    globello
    Newest Member
    globello
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      very interesting thanks for the info  
    • Florence Lillian
      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.