Geriatric Newby Caregiver
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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995
Everything posted by Geriatric Newby Caregiver
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Well, the diagnosis is complete (At least for now). While my wife has no villi anywhere in her small intestine, she dies not exhibit sufficient genetic markers and antibodies to conclude that she has Celiac disease. She has Enteropathy Associated T-cell Lymphoma, which sometimes follows Refractory Celiac Disease. But in her case, they have determined...
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Choline was addressed. We have found tge few foods that cause the least trouble. Biopsies of tissues collected throughout the entire length of the small bowel and colon revealed no villi anywhere (celiac disease is usually only responsible for destroying villi in the first third) plus microscopic colitis (which was not present in November when the...
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Updates since April: My wife has had no remission of symptoms with a gluten free diet alone. But we did switch to a new GI doctor who is a Celiac and Motility specialist at Stanford. She was skeptical of the diagnosis of Celiac Disease because she has not had any Celiac patients on TPN and the only evidence was the EGD showing celiac sprue. So, enzyme...
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You are right about the spelling. No, it duid not help. In fact, it may have increased the inflammation that is in her large intestine. We don't know what has been causing that, but it is in addition to the Celiac disease which is in the small intestine, of course. The only thing that seems to have helped has been steroids, which she gets prior to a...
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A good idea to learn would be to contact the kitchen staff at a hospital near you. They might even give you a brief educational tour. My understanding is that they have a dedicated part of their kitchen fir the gluten-free foods. Dedicated pans. Dedicated utensils. Dedicated fryers (if you use them) In our homes many of us simply went 100% gluten free...
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She has been tested for c.diff at least three times. They just did another culture to see whether any other kind of infection is going on. In addition to the Celiac disease (in the small intestine) there is something going on to cause inflammation in the colon as well, which has shown up in both a recent PET scan and CT scan. Just in case is might...
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I forgot to mention that we had tried this drug once before, but that was prior to the diagnosis when she was still consuming gluten regularly. No wonder it had no effect then.
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One of my wife's doctors just prescribed a "squestering" medication called Cholesystyramine, to help reduce the severity of her diarrhea. The idea is that it binds excess bile acid (which appears to be a major factor with her). We will let you know how it works.
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I feel great. But I am only tge caregiver. She still has severe diarrhea (10-15 time a day. Sometimes as much as 25) which is causing dehydration and electrolyte imbalance problems. We are now on her sixth hospitalization to restore fluids and potassium. Just today they started her on a new medication, Cholestyramine, which can be used to bind excess...
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Thanks for the info about lentils. It makes sense. And for the tip about the Gluten Free RN. This will be very helpful!
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We are 100% sure. Except when the Melatonin she was using had wheat and the rice noodles that said gluten free 7 times were found to have been processed on shared equipment. We have read the article. Very helpful, thank you. And much along the same lines as the hospital nutrtionist advised us. We clot rid of everything on out kitchen that wasn't glass...
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Just wondering. My wife has been gluten free now for just about two months. We know that that is not very long at all in the realm of recovery. But what we are wondering is whether or not it may help with her constant, totally watery diarrhea if she were to try anti-diarrheal medications like Immodium or Lomotil. Prior to her diagnosis, when the doctors...
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Thank you, Fran, We see a nutritionist every time we come into the hospital (for treatment of the potassium defficiency), and we have an appointment to start with a new TEAM of doctors that include a Celiac Specialist who is also a Motility Specialist, and a Nutritionist. May 10 is the first appointment we could get.
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At present, she does not tolerate ANYTHING in her GI tract, much less an adult nutrition supplement of any sort. That is why she has to be on TPN. It is frustrating, because even a sip of water will trigger a dumping syndrome. And 1 or 2 oz of water (even to take a medication) triggers a volume of 2-4 oz. of diarrhea. So drinking water, or a nutritional...
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Does anyone have any reliable information as to whether any generic versions of Benadryl are gluten-free? Where do you look to find out if an over-the counter (or even prescription, for that matter) medication is truly gluten free. We were surprised to learn that some of the Melatonin we were using was gluten free, and another brand said "contains wheat...
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Thank you. She has not been determined to be reTPN for a while. We will let the new doctors at Stanford determine if she is ready for steroids. I would not be surprised if they do.
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We have an appointment (on May 10th) with them. Thank you for pointing them out.
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The TPN was verified to be gluten free. It is not a DIETARY suppliment. It is not a food of any sort. It is a pre-digested nutritional solution that goes directly into her bloodstream via an intravenous port. But I did check, and verified that there is no gluten in it.
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No, it does not. I plan to discuss this with the nutritionist tomorrow.
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My wife has trouble absorbing ANYTHING taken orally. Even water triggers her dumping syndrome. And often as not, we find that since any medication she takes orally requires at least a sip of water, the pills come through unabsorbed in less than an hour. Would anyone have suggestions of some gluten-free liquid oral vitamins? Perhaps some of that qoukd...
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Thank you fir your suggestions. The TPN that she is using is not something that can be purchased from a manufacturer. It is custom formulated by a pharmacy acvording to professional recommendations of a nutritionist and has to be approved and ordered by the GI MD. It also requires weekly blood draws to evaluate electrolyte levels, etc. and monitoring...
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Will do the retest probably when we see the new doctor at Stanford in May. Thank you for the recommendation. We are really trying to eliminate all gluten from our home--new pots & pans, mixers, plastic bowls and storage containers, utensils, toasters and appliances etc. We cleaned all the cupboards, tore out the shelf paper and put in new, got new...
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I have learned not to say, "I presume so." So I will ask. But since it goes directly into a blood vessel, rather than the GI tract, I will be surprised if it is. There is certainly nothing listed on the prescription. All chemicals and pre-digested nutrients. I will call the supplier right away.
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Thanks for being a listening ear. Yes, she is getting intravenous vitamins along with her 16-hours per day of infusion that she depends on for nutrition. TPN means "Total Parenteral Nutrition". She has two ports (IV PICC lines) coming out of her arm that are used for the nutritional support. Nothing that she eats is absorbed. It all comes straight through...
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My wife is 73 years old, and after chronic diarrhea for nearly a year now, was diagnosed with celiac disease (EGD biopsy) six weeks ago. Her doctor seemed totally incredulous--even though he was the one who saw the Celiac sprue. "That doesn't happen to older people!". Are there any others out there who did not become particularly symptomatic...
