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

Celiac Disease To Refractory Sprue

USF1970

Recommended Posts

Gemini Experienced
Gemini
Posted

Character assassination does not help your argument. It only serves to make you look bad.

I think everyone knows how dangerous refractory sprue can be. I'm sure USF1970's doctors are taking it seriously.

Character assassination? :huh: Let's not make mountains out of molehills.....

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

It doesn't usually occur if someone has been long term gluten-free and very compliant.

Refractory Sprue is diagnosed when strict compliance to the diet, over an extended period of time, indicates continued villious atrophy.

It is non-responsive to the gluten free diet.

psawyer Proficient
psawyer
Posted

Character assassination? :huh: Let's not make mountains out of molehills.....

Let us see if we can get back to helping the original poster, USF1970. No point in attacking each other. :huh:

IrishHeart Veteran
IrishHeart
Posted

Refractory Sprue is diagnosed when strict compliance to the diet, over an extended period of time, indicates continued villious atrophy.

It is non-responsive to the gluten free diet.

Yes, and this is exactly what most of us have been saying to the OP (gemini, psawyer, and now, you). She has been very compliant, but here she is, with villous atrophy that has returned after many years.

The OP really needs to follow up with the doctor as this villous atrophy is NEW and there has to be a reason.

If she has been dietary compliant, then something OTHER than gluten is causing the problem. We outlined the differential diagnoses above.

This fact seems to be getting lost in the discussion somewhere.

Hopefully, the OP has a doctor who will test her appropriately.

IrishHeart Veteran
IrishHeart
Posted

I never meant to imply that you were not compliant with the diet....quite the contrary, I stated that this was not the case. I think you misunderstood my meaning. Refractory usually occurs when one doesn't know they have Celiac and keeps eating gluten or is not compliant to the diet after diagnosis. It doesn't usually occur if someone has been long term gluten-free and very compliant. The reason is usually an underlying condition. Now that you mention colitis, that could very well be the problem, although doesn't colitis happen in the large intestine only? I know a few Celiacs who also suffer with this and they take Immodium daily to prevent problems. Not an optimum treatment but necessary for them.

I do not think the OP misunderstood you, hon. I think she was just telling us --once again ---that she has been very compliant, so it CAN'T be gluten-related.

Right, OP? :)

USF1970 Apprentice
USF1970
Posted
  • Author

That's right 'Warrior Princess' - absolutely no offense taken by various replies. Just restating my frustrations, just venting, that's all. The irony here is I feel perfectly fine other than the occasional slight indigestion previously stated. I can't tell all of you all how helpful your support is b/c NO ONE, not even my daughter, totally understands. I ran into an acquaintance yesterday, who, after remarking about how much weight I have lost, stated that she wished she had celiac disease. I assured her she didn't really mean that but it fell on deaf ears - all she could see was my weight loss!!! Again, thanks for your thoughtful and helpful replies. Y'all are a GREAT support and I'll keep you posted. Have a great weekend.

IrishHeart Veteran
IrishHeart
Posted

I ran into an acquaintance yesterday, who, after remarking about how much weight I have lost, stated that she wished she had celiac disease.

:rolleyes: Just goes to show you how truly ignorant folks are about this disease. If she had seen what happened to me? to others on here? --she would never had made such a naive statement.

I hope you get answers and I hope you'll come back and tell us what you learned.

Best wishes!

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

Celiac.com Sponsor (A8-M):


dilettantesteph Collaborator
dilettantesteph
Posted

The irony here is I feel perfectly fine other than the occasional slight indigestion previously stated.

I think it is great that you keep such a positive attitude. I hate being so symptomatic sometimes, but I can see how it can be helpful too. I hope your next doctors visit shows improvement.

lucky28 Explorer
lucky28
Posted

I just wanted to put in my 2 cents~Just last month I read about a recent case study on a medical site where the woman in question was having a similar problem as yours. What they discovered is that it was her lotion/cosmetics causing a low but constant level of gluten. in addition to the other suggestions here I might double check your personal products~make sure ingredients are (still) safe.

i'm on my (crappy) cell tonight, but if you want msg me and I'll send a link to the article next time I'm on the computer.

USF1970 Apprentice
USF1970
Posted
  • Author

Thanks Lucky 28 for the suggestion but I've just gone down that road. Just an FYI, Physician's Formula is the only cosmetic line I can find that states flatly that all their products are gluten free. Others mealy-mouth around stating that if gluten is present, it would be so stated. Something is really bothering my eyes (the product states it's gluten-free) but I just think the skin around my eyes are super-sensitive and the product I was using was too strong. I'm home today b/c my eyes are so irritated and the only thing I can think to use is vasoline to calm down the skin. Can't wear Vasoline and eye make up at the same time :( And I sure wouldn't consider going to work w/no make-up. I truly below the problem w/the skin around my eyes has not been caused by gluten. I see my doc late next week and I hope that I've gained a bit of weight by avoiding Udi, BRM and Glutino products. Those seem to be the only gluten-free products that bother me so I'm hoping its just a matter of becoming super-sensitive to some gluten products and also oats cc. Thanks for all the good wishes; I'll let you know what the doc says.

Linda in Savannah, GA

USF1970 Apprentice
USF1970
Posted
  • Author

Sometimes I wish I were more symptomatic to traces to gluten. Before gluten-free, I didn't realize I was symptomatic - the only symptoms I had was indigestion (extreme to the point of nausea only infrequently)and constipation. Now, after being gluten-free for over 12 years, I am very symptomatic if I accidentally (realizing after the fact) that I've ingested gluten (and that's only happened once and once was enough) - but traces of gluten, not so much. Best of luck to you.......feel better.

  • 2 weeks later...
mushroom Proficient
mushroom
Posted

I see my doc again in two weeks. What blood tests would you recommend I have? I'm at a loss here but you've seen me say this before and I mean it - I'll eat gravel before I take cyclosporin. Many, many thanks for all of your helpful comments.

Linda in Savannah, GA

I have been reading through your posts since refractory sprue first came up and I see you were recently scheduled for a doctor's visit. How did that go and what suggestions did he have as to how to proceed? What were the results of your genetic testing?

The thought came to mind as to what other verification of your endoscopic findings have been done? Has he run any of the celiac blood tests again? If there were sufficient gluten to cause total villous atrophy there must be some antibodies circulating in your bloodstream, perhaps? Has he run the DGP (deamidated gliadin peptide) which is very specific for celiac disease? (Not the tTG which is unfortunately rather nonspecific and can be caused by other things).

A quick google produced the following:

https://www.celiac.com/articles/710/1/Refractory-Sprue-by-Michelle-Melin-Rogovin-University-of-Chicago-Celiac-Disease-Program/Page1.html

How is refractory sprue diagnosed and treated?

It must be established through a thorough diet history and antibody testing that the individual is adhering to a strict gluten-free diet. Then, all other gastrointestinal diseases have to be ruled out before a diagnosis of refractory sprue is made. Conditions to be ruled out include pancreatic insufficiency, lactose malabsorption, parasite infestation, intolerance to other food proteins, coexisting inflammatory bowel disease, and autoimmune enteropathy, among others.

Diagnosis should include a test called an enteroscopy, which is a procedure that explores more of the small intestine, and often finds ulcerative jejunitis, a marker of damage in refractory sprue. In addition, because the abnormal IELs can proliferate throughout the gut, a colonoscopy is recommended to determine if lymphocytic colitis is present.

Now, I cannot say I have read every word of every post and you may have mentioned some of these things, but it would be interesting to know if they have been considered.

I hope your doctor's visit went well and that you got some answers. :)

Archived

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

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


  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748
    Tara M
    Newest Member
    Tara M
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      The Happy Tart review

      By Francis M · Posted

      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      The Happy Tart review

      By Scott Adams · Posted

      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Stomach burning and neuropathy

      By Scott Adams · Posted

      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
×
×
  • 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.