Any older people just diagnosed?

[GF-Cate]

On 3/19/2022 at 12:22 PM, Geriatric Newby Caregiver said:

Does anyone know of any really good celiac doctors in the San Francisco Bay area? 

Celiac Disease Program at Stanford Health Care

https://stanfordhealthcare.org/medical-clinics/celiac-disease-program.html

"We offer one of only a handful of centers in the US and the only one in Northern California with dedicated specialists who focus solely on treating and studying celiac disease." 

[knitty kitty]

On 3/19/2022 at 11:22 AM, Geriatric Newby Caregiver said:

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 until they were "senior citizens"?  

She has lost a lot of weight and has been on TPN for 2-1/2 months. Diarrhea (dumping syndrome) occurs 10-15 times a day and seems to be triggered by anything that goes into her mouth, even small amounts of water!  Oral medications pass right through. 

We just discovered last night that the Melatonin she had been taking off and on has the disclaimer,  "contains wheat" printed on the label. (One that we forgot to check! Darn!) Unfortunately,  it was AFTER she took a dose. It is hard to get much sleep if you are waking up with diarrhea every two hours!  

We were also tricked last week by a food product, called "Pho-Nominal Bowl"  that had "Gluten Free" printed on the box seven times, but we unfortunately did not notice the disclaimer that it was processed on equipment that also processes wheat.

The only good things coming from those two experiences are that, as bad as her diarrhea is, even slight exposures to gluten make it worse. And we are more serious than ever about reading labels more carefully so we can stay completely away from gluten!

Has anyone found anything that can assist in recovering more quickly from an accidental exposure to gluten? Drinking lots of water, for example?

She also has trouble because all oral medications that she takes for other concerns (hypothyroidism, deoression, even antibiotics for sepsis) are not being absorbed. We conquered the sepsus with IV antibiotics,  but the depression is a growing issue.

We are told that older folks take longer for the villi to regenerate. Is there nothing that can help? Do these "accidental exposures" prevent recovery? What can be done to help the problem of malabsorption and rapid transit from reducing the effectiveness of other oral medications?  Does anyone know of any really good celiac doctors in the San Francisco Bay area? 

 

Anything that could help will be appreciated. Thanks!

Welcome to the forum! 

Sorry to hear your wife is having such a rough time.  

Her symptoms sound a lot like mine did when I had Gastrointestinal Beriberi, a manifestation of Thiamine deficiency.  

Here's some articles you can read and discuss with your doctor....

 

Elevated Lactate Secondary to Gastrointestinal Beriberi

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4699997/

And...

Gastrointestinal beriberi: a forme fruste of Wernicke’s encephalopathy?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6040496/

 

Thiamine deficiency made me depressed...

Thiamine Nutritional Status and Depressive Symptoms Are Inversely Associated among Older Chinese Adults

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3521461/

 

Thiamine deficiency is common in hypothyroidism....

Thiamine and Hashimoto's thyroiditis: a report of three cases

https://pubmed.ncbi.nlm.nih.gov/24351023/

 

Thiamine deficiency is common in sepsis...

Thiamine Deficiency: An Important Consideration in Critically Ill Patients

https://pubmed.ncbi.nlm.nih.gov/30146080/

 

Thiamine deficiency can be precipitated by antibiotics.....

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

 

To correct Thiamine deficiency, high doses of thiamine need to be administered, more thiamine than your wife is getting in her vitamin vials. 

My symptoms started improving within hours of high dose Thiamine.  It was truly amazing.   

Look into the Autoimmune Protocol Diet, a Paleo diet developed by a Celiac doctor, Dr. Sarah Ballantyne, scientifically proven to promote healing in autoimmune diseases.  

Hope this helps!

 

[Wheatwacked]

On 3/20/2022 at 4:19 PM, Geriatric Newby Caregiver said:

It also requires weekly blood draws to evaluate electrolyte levels, etc. and monitoring by a home heathcare nurse.

Could the doctor order a blood draw by the home health nurse to see if the celiac panel results have changed or at least to get a basis to compare again later? No reason for another endoscopy especially in her fragile state I am sure she does not want anesthesia if it can be avoided.

On 3/19/2022 at 12:22 PM, Geriatric Newby Caregiver said:

TPN for 2-1/2 months...diagnosed with celiac disease (EGD biopsy) six weeks ago. 

The TPN was formulated prior to the celiac disease diagnosis, so no reason to make it gluten free. Has the doctor revised the TPN prescription from TPN to TPN for Celiac? It may be different. Maybe an abundance of caution but changing TPN might be the answer even if this one is "gluten free"

Have they tried a steroid like prednisolone?  Refractory Celiac Disease

It is only 6 weeks, but most people see an almost immediate improvement in some aspect once they start GFD. I am sorry the new doctor is still weeks away. The wait must be driving you nuts.

It could also be that the Celiac is healing but the symptoms of Thiamine and Choline deficiencies are hiding it. The Celiac blood tests would be an indication if gluten was still the problem. Antidepressants also suck up thiamine. Antibiotics tend to kill the good bacteria along with the bad, and that may slow gut recovery. There is research the raising her plasma vitamin D above 70 ng/ml has the effect of down modulating the Celiac genes and my own experience with D is that I need to take 10,000 IU a day to maintain 80 ng/ml plasma and once I started 10,000 a day it broke a very long (decades) case of Seasonal Depressive Syndrome SAD, that 5000 iu a day did not help. It was like flipping a switch.

 

 

Edited March 22, 2022 by Wheatwacked

[trents]

I agree with Wheatwacked in his thought about trying prednisone or something similar to get the immune system under control and potentially break the cycle.

[Phyl]

On 3/19/2022 at 10:22 AM, Geriatric Newby Caregiver said:

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 until they were "senior citizens"?  

She has lost a lot of weight and has been on TPN for 2-1/2 months. Diarrhea (dumping syndrome) occurs 10-15 times a day and seems to be triggered by anything that goes into her mouth, even small amounts of water!  Oral medications pass right through. 

We just discovered last night that the Melatonin she had been taking off and on has the disclaimer,  "contains wheat" printed on the label. (One that we forgot to check! Darn!) Unfortunately,  it was AFTER she took a dose. It is hard to get much sleep if you are waking up with diarrhea every two hours!  

We were also tricked last week by a food product, called "Pho-Nominal Bowl"  that had "Gluten Free" printed on the box seven times, but we unfortunately did not notice the disclaimer that it was processed on equipment that also processes wheat.

The only good things coming from those two experiences are that, as bad as her diarrhea is, even slight exposures to gluten make it worse. And we are more serious than ever about reading labels more carefully so we can stay completely away from gluten!

Has anyone found anything that can assist in recovering more quickly from an accidental exposure to gluten? Drinking lots of water, for example?

She also has trouble because all oral medications that she takes for other concerns (hypothyroidism, deoression, even antibiotics for sepsis) are not being absorbed. We conquered the sepsus with IV antibiotics,  but the depression is a growing issue.

We are told that older folks take longer for the villi to regenerate. Is there nothing that can help? Do these "accidental exposures" prevent recovery? What can be done to help the problem of malabsorption and rapid transit from reducing the effectiveness of other oral medications?  Does anyone know of any really good celiac doctors in the San Francisco Bay area? 

 

Anything that could help will be appreciated. Thanks!

I am also 73 and it took 10 years plus to get a diagnosis. Mayo Clinic did genetic test.  Now I follow Dr Peter Osborne, And am self educating. He wrote No Grain No Pain. He has celiac and is amazing sharing his knowledge on utube also

sooo many Foods and products have hidden Gluten. It’s a learning process starting with a totally clean diet!! The guy needs to heal and then some foods that you may have had allergy to can be slowly reintroduced...but no grains ever. 🙏
 

 

[Phyl]

18 hours ago, Celiawithceliac1 said:

Ok so she needs to go fully grain free.

 

as many people stated  above keeping it simple is best food wise while she heals. Meat, bone broth, veggies and fruit. 
 

im sorry you’re dealing with this. Check out Dr Peter Osborne on YouTube he’s helped me tremendously through his book and free content. 
 

hoping she gets relief.

Me too. He’s straight forward and so very knowledgeable 👍

[Geriatric Newby Caregiver]

On 3/19/2022 at 1:34 PM, trents said:

Yes, but anything that goes into the blood stream will make to the gut tissues via the vascular system.

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.

[Geriatric Newby Caregiver]

On 3/19/2022 at 11:17 AM, Wheatwacked said:

something to check is if they are adding Choline to the TPN.

Checking with the pharmacist, Choline is not currently available as an addition to a TPN intravenous solution in the US.  We may be able to try an oral solution.  I was told that in Europe, they have been administering it IV, but not here.  She said she wished she could give it to her TPN patients, but at present, she cannot.

On 3/19/2022 at 11:17 AM, Wheatwacked said:

something to check is if they are adding Choline to the TPN.

Checking with the pharmacist, Choline is not currently available as an addition to a TPN intravenous solution in the US.  We may be able to try an oral solution.  I was told that in Europe, they have been administering it IV, but not here.  She said she wished she could give it to her TPN patients, but at present, she cannot.

21 hours ago, GF_Cate said:

Celiac Disease Program at Stanford Health Care

https://stanfordhealthcare.org/medical-clinics/celiac-disease-program.html

"We offer one of only a handful of centers in the US and the only one in Northern California with dedicated specialists who focus solely on treating and studying celiac disease." 

We have an appointment (on May 10th) with them.  Thank you for pointing them out.

 

[Geriatric Newby Caregiver]

On 3/20/2022 at 9:17 PM, Wheatwacked said:

bingo!

More information: This case from 2014 seems similar to yours. Their case resolved with only 5 days TPN.

"In the majority of RCD type 1 cases, steroid use is effective in inducing clinical remission and mucosal recovery; however, use in RCD type 2 shows clinical response in 75%, but does not induce mucosal recovery or prevent the progression to EATL...a short period of TPN in our patient induced remission of celiac disease, enabling successful recovery, weight gain and total control of symptoms."

Severe Refractory Coeliac Disease with Response Only to Parenteral Nutrition

 

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.  

[Wheatwacked]

5 hours ago, Geriatric Newby Caregiver said:

We may be able to try an oral solution.

DO IT. Don't wait on the doctors because they have no official guidance in this. Procrastination is dangerous, if it is the problem, improvement will be seen. Fix what you know is wrong and reevaluate. For only $15 a bottle of choline bitartrate or phosphatidyl choline may save her life.

Quote

Hepatic steatosis decreased significantly in all four subjects at the time of the initial follow-up CT scan, which was obtained 2 weeks after choline chloride supplementation was initiated.  Choline Deficiency: A Cause of Hepatic Steatosis During Parenteral Nutrition That Can Be Reversed With  Intravenous Choline Supplementation

Quote

Studies in patients receiving long-term TPN have shown that low levels of plasma choline are common and can be associated with hepatic steatosis. Treatment of these patients with oral administration of choline improved plasma levels and decreased hepatic fat content; however, oral choline supplements are associated with poor compliance.   https://pubmed.ncbi.nlm.nih.gov/9183326/#:~:text=Current evidence strongly suggests that,be associated with hepatic steatosis.

 

 

The use of prednisone may be an appropriate discussion with the new doctors, but the Choline deficiency cannot wait. Especially since there is no other mainstream treatment anyway. 

Apparently, the solution here is oral supplements.  Even though the link between TPN and fatty liver has been known since the 70's. Adding choline to TPN has been recommended by researcher since 1998. I guess it isn't profitable.

Since the medical industry is not stepping up, I suggest you get a bottle of phosphatidyl Choline or choline bitartrate and somehow swallow one or two capsules a day. The RDA is 425 mg of choline, upper safe level is 3500 mg.   Oregon State University. Linus Pauling Institute   https://lpi.oregonstate.edu/mic/other-nutrients/choline

Choline Deficiency: A Cause of Hepatic Steatosis During Parenteral Nutrition That Can Be Reversed With  Intravenous Choline Supplementation ; HEPATOLOGY November 1995.

[knitty kitty]

40 minutes ago, Wheatwacked said:

DO IT. Don't wait on the doctors because they have no official guidance in this. Procrastination is dangerous, if it is the problem, "improvement will be seen. Fix what you know is wrong and reevaluate. For only $15 a bottle of choline bitartrate or phosphatidyl choline may save her life.

 

 

The use of prednisone may be an appropriate discussion with the new doctors, but the Choline deficiency cannot wait. Especially since there is no other mainstream treatment anyway. 

Apparently, the solution here is oral supplements.  Even though the link between TPN and fatty liver has been known since the 70's. Adding choline to TPN has been recommended by researcher since 1998. I guess it isn't profitable.

Since the medical industry is not stepping up, I suggest you get a bottle of phosphatidyl Choline or choline bitartrate and somehow swallow one or two capsules a day. The RDA is 425 mg of choline, upper safe level is 3500 mg.   Oregon State University. Linus Pauling Institute   https://lpi.oregonstate.edu/mic/other-nutrients/choline

Choline Deficiency: A Cause of Hepatic Steatosis During Parenteral Nutrition That Can Be Reversed With  Intravenous Choline Supplementation ; HEPATOLOGY November 1995.

@Wheatwacked,

It's more important to fix the thiamine deficiency first because choline cannot be utilized properly without a thiamine derived component.

This explains it.....

Acetyl-CoA and acetylcholine metabolism in nerve terminal compartment of thiamine deficient rat brain

https://onlinelibrary.wiley.com/doi/10.1111/j.1471-4159.2010.06919.x

The body can make choline, but the body cannot make thiamine.  

Edited March 23, 2022 by knitty kitty
Typo correction

[Wheatwacked]

Yes. Thiamine and Choline are interdependent, and both are undervalued. I assumed that her vitamin and lipid packs include thiamine, but we know for sure she is not getting any choline.

[knitty kitty]

22 minutes ago, Wheatwacked said:

Yes. Thiamine and Choline are interdependent, and both are undervalued. I assumed that her vitamin and lipid packs include thiamine, but we know for sure she is not getting any choline.

Supplementing just choline could cause a substantial drop in Thiamine.  Thiamine deficiency manifesting as gastrointestinal beriberi should be corrected first with high dose thiamine.  And because the eight essential B Complex vitamins work together, a good B Complex supplement would be beneficial.

There are sublingual thiamine supplements and liquid thiamine supplements on Amazon.  High dose Thiamine supplementation should be 300-500 mg (minimum) three times a day.    

 

[Wheatwacked]

Here's an interesting comment from the National Institutes of Health on Choline.

https://ods.od.nih.gov/factsheets/Choline-HealthProfessional/

"Groups at Risk of Choline Deficiency:

Patients requiring total parenteral nutrition
At present, choline is not routinely added to commercial parenteral solutions for infants and adults [28,29]. As a result, adults and infants receiving total parenteral nutrition (TPN) over the long term have low plasma choline concentrations (approximately 5 nmol/ml in adults and 5.7 nmol/ml in infants), which can result in hepatic abnormalities, including NAFLD [30-32]. The American Society for Parenteral and Enteral Nutrition recommends the routine addition of choline to adult and pediatric parenteral nutrition formulations, and calls for the development of a commercially available parenteral product that contains choline [28]...Plasma choline levels do not decline below 50% of normal, even in individuals who have not eaten for more than a week [3]. This may be due to the hydrolysis of membrane phospholipids, a source of choline, to maintain plasma choline concentrations above this minimal level, or to endogenous synthesis [2]."

She's at eleven weeks with no choline. Without enough choline the body can not heal. Other deficiencies can also cause the symptoms but Choline is the elephant in the room and should be rectified immediately and does not need a doctor's order.

9 hours ago, Geriatric Newby Caregiver said:

She said she wished she could give it to her TPN patients, but at present, she cannot.

Does she offer a suggestion?

Quote

 Choline is involved in creating cell membranes, which are made of two layers of fat that maintain the structure of cells, tissues and organs. It’s also involved in a critical step in the making of DNA, which is needed to maintain healthy cells and organ systems.   https://foodinsight.org/what-is-choline-essential-nutrient/#:~:text=Choline is involved in creating,healthy cells and organ systems.

 

Quote

Conclusions: This study demonstrates that the currently recommended 3 mg of thiamine hydrochloride added to TPN solutions is adequate to maintain normal thiamine status.   https://pubmed.ncbi.nlm.nih.gov/8946985/#:~:text=Results%3A All thiamine pyrophosphate and,to maintain normal thiamine status.

 

[Geriatric Newby Caregiver]

On 3/19/2022 at 2:13 PM, Wheatwacked said:

As a just weaned infant my son born in 1976 suddenly bloated up. I was shocked when I looked at him and remembered newpaper photos of Biafran babies shortly after the Biafran Relief contracted for supplies of the new "green" wheat instead of the rice they had been buying. Convinced he was not "just colicky", and it was not maternal stress (numerous recommendations for valium for my wife), he was biopsied by the only pediatrician in Israel studying Celiac Disease. My son became his 13th patient for Celiac Disease in a population of about 5 million. The doctor recommended Nutramigen over Similac and other infant formulas because it is totally hypoallergenic. It is also the only infant formula with Choline. The response was immediate. After a few months he was transitioned to a Gluten free diet and grew up. At age 63 in 2014 I looked at myself and saw the same image of that Biafran baby.

Although expensive for an adult nutrition a can contains 2000 calories and costs around $40. I suspect the TPN is more even more expensive, so it might be appropriate to consider and talk to her doctors about transitioning her from total TPN to Nutramigen if she tolerates it.  The TPN alone just doesn't seem to be the answer if there is no change after more than two months. 

Symptoms of Hepatic Steatosis   https://www.healthline.com/health/fatty-liver

abdominal pain

loss of appetite

weight loss

weakness or fatigue

nausea

itchy skin

yellow skin and eyes

easy bruising or bleeding

dark-colored urine

pale stools

fluid accumulation in the abdomen (ascites)

swelling (edema) of your legs

web-like clusters of blood vessels under your skin

breast enlargement in men

confusion

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 supplement, or eating food or anything results in a net LOSS of fluid from the body.  It is a puzzle.  She drinks water and gets more dehydrated.  She eats food, and gets more dehydrated.  The only thing that is keeping her alive now is the TPN.

We are hoping that in time, the gluten-free diet results in a cessation, or at least a decrease, in the diarrhea.  But that, as you all know, is a wait-and-see (how long it will take) thing. 

[Geriatric Newby Caregiver]

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.

 

[knitty kitty]

Thiamine Deficiency Causes Intracellular Potassium Wasting

https://www.hormonesmatter.com/thiamine-deficiency-causes-intracellular-potassium-wasting/

And....

Safety of intravenous push thiamine administration at a tertiary academic medical center

https://pubmed.ncbi.nlm.nih.gov/31932197/

 

Thiamine can be administered by iv in a hospital.  Doctors diagnose thiamine deficiency by administration of thiamine and looking for improvement.  

 

[Wheatwacked]

I do understand her inability to tolerate anything. I spent a week NPO in the hospital when I had acute pancreatitis. I am glad they are addressing the potassium deficiency but sorry to hear they are not the choline. Perhaps adding a phosphatidyl choline pill with the thyroxine? Better than nothing. Hopefully the folks at Stanford will help. Keep us updated please. I think it criminal that the bureaucracy would choose a liver transplant over intravenous choline that could be done while at the hospital for the potassium issue. Be sure to raise the question with the new TEAM. 

Quote

DR BUCHMAN: One of the things that we have to think about is that the FDA may be able to assist with product development. In fact, we received funding for much of our research under the Orphan Drug Act, but even the development incentives offered under this law may be insufficient to encourage development of inexpensive products for such a small market. ..Evidence has accumulated that hepatic steatosis, which occurs during parenteral nutrition therapy, develops as a result of choline deficiency because endogenous production of choline from parenterally infused methionine is deficient. In addition, memory deficits and skeletal muscle abnormalities have been described, and choline deficiency appears to activate cellular apoptosis. Provision of intravenous choline ameliorates hepatic steatosis associated with parenteral nutrition infusion. https://www.gastrojournal.org/article/S0016-5085(09)01444-9/fulltext?referrer=https%3A%2F%2Fpubmed.ncbi.nlm.nih.gov%2F

Quote

We studied four patients (1 man, 3 women) aged 50 ? 13 years who had low plasma-free choline concentrations 4.8 t 1.7 (normal, 11.4 t 3.7 nmoVmL). The patients had received TPN for 9.7 +- 4.7 years. They received parenteral nutrition solutions containing choline chloride (1 to 4 g/d) for 6 weeks. Abdominal computed tomography (CT) was performed at baseline, biweekly during the choline supplementation, and 4 weeks after discontinuation of choline. During choline administration, the plasma-free choline concentration increased into the normal range within 1 week in all four patients and remained at or above the normal range for all 6 weeks, but decreased back to baseline when choline supplementation was discontinued. Hepatic steatosis resolved completely, as estimated by CT     https://aasldpubs.onlinelibrary.wiley.com/doi/pdf/10.1002/hep.1840220510

 

[bluerider601]

On 3/19/2022 at 10:22 AM, Geriatric Newby Caregiver said:

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 until they were "senior citizens"?  

She has lost a lot of weight and has been on TPN for 2-1/2 months. Diarrhea (dumping syndrome) occurs 10-15 times a day and seems to be triggered by anything that goes into her mouth, even small amounts of water!  Oral medications pass right through. 

We just discovered last night that the Melatonin she had been taking off and on has the disclaimer,  "contains wheat" printed on the label. (One that we forgot to check! Darn!) Unfortunately,  it was AFTER she took a dose. It is hard to get much sleep if you are waking up with diarrhea every two hours!  

We were also tricked last week by a food product, called "Pho-Nominal Bowl"  that had "Gluten Free" printed on the box seven times, but we unfortunately did not notice the disclaimer that it was processed on equipment that also processes wheat.

The only good things coming from those two experiences are that, as bad as her diarrhea is, even slight exposures to gluten make it worse. And we are more serious than ever about reading labels more carefully so we can stay completely away from gluten!

Has anyone found anything that can assist in recovering more quickly from an accidental exposure to gluten? Drinking lots of water, for example?

She also has trouble because all oral medications that she takes for other concerns (hypothyroidism, deoression, even antibiotics for sepsis) are not being absorbed. We conquered the sepsus with IV antibiotics,  but the depression is a growing issue.

We are told that older folks take longer for the villi to regenerate. Is there nothing that can help? Do these "accidental exposures" prevent recovery? What can be done to help the problem of malabsorption and rapid transit from reducing the effectiveness of other oral medications?  Does anyone know of any really good celiac doctors in the San Francisco Bay area? 

 

Anything that could help will be appreciated. Thanks!

I am 79 yrs old and I was diagnosed at 76 yrs. after loosing 35 lbs and having c-diff.  I still have diarrhea.  Nothing that I have found 'fixes' it.  I can go out by taking a medication that I received from my Gastro dr.  That will last for the afternoon until about 6 or 7 pm, then I need two more of these tiny little pills or be at home.  As for the depression, I look at others stories and see that I am truly blessed because as bad as the Celiac Disease is for me - there are many others who have it much worse.  I cried and cried at first though. Good luck.  go out when possible, enjoy life even though you have celiac.

[Phyl]

On 3/19/2022 at 9:22 AM, Geriatric Newby Caregiver said:

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 until they were "senior citizens"?  

She has lost a lot of weight and has been on TPN for 2-1/2 months. Diarrhea (dumping syndrome) occurs 10-15 times a day and seems to be triggered by anything that goes into her mouth, even small amounts of water!  Oral medications pass right through. 

We just discovered last night that the Melatonin she had been taking off and on has the disclaimer,  "contains wheat" printed on the label. (One that we forgot to check! Darn!) Unfortunately,  it was AFTER she took a dose. It is hard to get much sleep if you are waking up with diarrhea every two hours!  

We were also tricked last week by a food product, called "Pho-Nominal Bowl"  that had "Gluten Free" printed on the box seven times, but we unfortunately did not notice the disclaimer that it was processed on equipment that also processes wheat.

The only good things coming from those two experiences are that, as bad as her diarrhea is, even slight exposures to gluten make it worse. And we are more serious than ever about reading labels more carefully so we can stay completely away from gluten!

Has anyone found anything that can assist in recovering more quickly from an accidental exposure to gluten? Drinking lots of water, for example?

She also has trouble because all oral medications that she takes for other concerns (hypothyroidism, deoression, even antibiotics for sepsis) are not being absorbed. We conquered the sepsus with IV antibiotics,  but the depression is a growing issue.

We are told that older folks take longer for the villi to regenerate. Is there nothing that can help? Do these "accidental exposures" prevent recovery? What can be done to help the problem of malabsorption and rapid transit from reducing the effectiveness of other oral medications?  Does anyone know of any really good celiac doctors in the San Francisco Bay area? 

 

Anything that could help will be appreciated. Thanks!

Only relief I have found is following Dr Osborne and reading No grain No pain. 
it has made me aware of ALL gluten products which I never realized. My gut healed after 2 years. He has many science based answers to healing 

 

[Scott Adams]

On 3/30/2022 at 8:38 AM, bluerider601 said:

I am 79 yrs old and I was diagnosed at 76 yrs. after loosing 35 lbs and having c-diff.  I still have diarrhea.  Nothing that I have found 'fixes' it.  I can go out by taking a medication that I received from my Gastro dr.  That will last for the afternoon until about 6 or 7 pm, then I need two more of these tiny little pills or be at home.  As for the depression, I look at others stories and see that I am truly blessed because as bad as the Celiac Disease is for me - there are many others who have it much worse.  I cried and cried at first though. Good luck.  go out when possible, enjoy life even though you have celiac.

Welcome to the forum. You did not mention whether or not you are following a strict gluten-free diet, which is the main thing you should be doing if you have celiac disease. If so, what medications are the doctors giving you, and why do you need them?

[Phyl]

2 minutes ago, Scott Adams said:

Welcome to the forum. You did not mention whether or not you are following a strict gluten-free diet, which is the main think you should be doing if you have celiac disease. If so, what medications are the doctors giving you, and why do you need them?

Totally clean diet. No grains soy rice sugar oats. Grass fed and finished meat organic veggies. No meds No supplements with gluten fillers. Takes education and research but worth it