Any older people just diagnosed?

[Geriatric Newby Caregiver]

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!

[trents]

Welcome to the forum GNC!

You are in a tough situation and I don't have any big ideas for you.

Your doctor revealed his ignorance about celiac disease by saying, "That doesn't happen to older people!" Celiac disease can manifest itself at any stage of life and we have plenty on this forum in the geriatric crowd who will attest to that. But, I'm guessing your wife went many years as a "silent" celiac before the damage to the small bowel villi became so significant that she became symptomatic. It commonly takes 10 years or more to get diagnosed even after the first symptoms start appearing. Typically, the symptoms are mild at first and lead to a whole string of missed diagnostic episodes before someone thinks to check for celiac disease. celiac disease is often misdiagnosed as IBS, for instance. Ignorance in the medical community is appalling but is slowly improving. Best bet for getting a quicker diagnosis is going with a GI doc but even many of them, especially, if they have been out of med school for many years, are not up to speed.

There is not much that an be done to speed up recovery from accidental glutening episodes.

But let me make you aware that celiacs often develop other food intolerances in addition to gluten. Intolerance to dairy and oats (even gluten free oats) are high on the list but also soy, eggs and corn. There are a number of food proteins like those found in these foods that are similar enough to gluten to cause a cross reaction in some celiacs. So, you might look at that piece.

Also, check any pills and supplements that might contain wheat starch as a filler.

When you shop for gluten-free products, look for the label "Certified Gluten Free" as opposed to just "Gluten Free." Certified Gluten Free products are manufactured to a stricter standard that are Gluten Free products. It can take awhile to get savvy about food labeling as it is used in the industry. As you have already discovered, food items may seem to be gluten-free because wheat, barley or rye does not show up in the ingredient list but because of CC (Cross Contamination) it may still possess enough gluten to cause a reaction in many celiacs. In your wife's situation I would never trust any food product that is labeled gluten-free but then states it was manufactured on equipment that may have been used to produce products containg the three gluten grains.

My other suggestion is to avoid using processed food products as much as possible (even gluten-free ones) and focus on cooking from scratch using fresh, simple, basic foods such as fresh meat, veggies and fruit. You see, gluten-free flours are not required to be fortified with vitamins like their wheat counterparts. gluten-free processed foods contain a lot of rice, tapioca, bean flours and other starchy ingredients that are practically devoid of nutrition.

This might help:

I also suspect your wife is suffering from vitamin and mineral deficiencies. She would almost have to be by now. If there was someway to get some high potency multi-vitamin and high potency B-complex in her and keep it in the system long enough to do some good that would be a good thing to do. I wonder if there are some gluten-free liquid vitamin products available that might help with that. But whatever you get along that line must be gluten-free. Costco's Nature Made vitamins and supplements are a good choice but they are in pill form.

[Geriatric Newby Caregiver]

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 in a matter of ours.  Sometimes even minutes. She receives not only vitamins, but electrolytes, carbs, protein and even lipids (fats) through the PICC line directly into her vein.

The doctor that diagnosed her IS a GI, but has little knowledge of celiac disease.  The EGD that he finally performed after a million other tests is what opened his eyes to the fact that she had Celiac Sprue.  Since then, all he has been able to do is say, "Wait and see".  We have an appointment with a doctor at the Stanford Digestive Health Program, who has published research recently on celiac disease and gluten, among other things.  But the first appointment is not until May 10th.  We call every day to see if there has been a cancellation.  The problem is, that everyone else who might be calling for "the next available appointment" is just as likely as we are to get one if it comes up.  We are hoping that being the "squeakiest wheel" will help us out sometime.  

[Wheatwacked]

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

Quote

Current evidence strongly suggests that choline is "conditionally essential," particularly for patients receiving total parenteral nutrition (TPN). Studies in patients receiving long-term TPN have shown that low levels of plasma choline are common and can be associated with hepatic steatosis.    https://pubmed.ncbi.nlm.nih.gov/9183326/#:~:text=Current evidence strongly suggests that,be associated with hepatic steatosis.

 

[trents]

Is her TPN gluten free?

[plumbago]

GNC,

What the issue often is, is that a really good GI doc may not know a lot about Celiac, and a good Celiac doc (if there even are any), is not a great diagnostician. I mention this because I'm also wondering if there are other GI issues ongoing (eg something like microscopic lymphocytic colitis). Oh I feel so bad for you both, having to be fed via IV, absolutely no fun. My guess is that the TPN is gluten free, but it's worth a double check, for sure. Dumber things have happened. I would second the suggestion to make food totally for from scratch for now.

I know a lot of people in the Bay Area, but cannot think of a top doc off the top of my head. As someone with celiac disease myself, my experience in Berkeley was that most people are extremely gluten-aware. (I love Berkeley and SF.) celiac disease is not something doctors see a lot, as a rule - my own doctor diagnosed me only because the doctor of a relative of his diagnosed her! Otherwise, I'm not sure my case would have been caught. But yes of course, celiac disease is massively underdiagnosed in those over 55. It is only stereotypically a childhood "wasting" disease.

In terms of what to do if your wife has had an exposure, I'm afraid I'm not sure of remedies. Finally, I am somewhat familiar with some of the docs at UCSF, have you tried there? You can also search for doctors on this site.

Plumbago

Edited March 19, 2022 by plumbago

[Scott Adams]

This article may be helpful regarding recovery from accidental gluten ingestion:

 

[Geriatric Newby Caregiver]

1 hour ago, trents said:

Is her TPN gluten free?

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.

[trents]

15 minutes ago, Geriatric Newby Caregiver said:

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.

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

Edited March 19, 2022 by trents

[Wheatwacked]

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. 

Quote

Patients dependent on intravenous nutrition—Total parenteral nutrition (TPN) is administered through a vein to people whose digestive tracts cannot tolerate solid food due to disease, surgery, or other digestive conditions. Choline is not typically included in TPN formulas unless specified. [13] NAFLD has been observed in long-term TPN patients. [1]   https://www.hsph.harvard.edu/nutritionsource/choline/ 

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

[Kate333]

Hi GNC.  As you learned the hard way, even trace, small amounts of gluten are harmful.  To date, the ONLY treatment for this condition and way to heal is to avoid ALL and ANY gluten exposure for the rest of her life. Simply reducing G consumption of "obvious" sources of G (bread, pasta made with wheat flour, for example) or thinking it safe to have "only occasional" G consumption will not heal the gut.  

 Essentially, I have found that the only sure way to prevent "accidental" G exposure is to avoid eating any processed, packaged foods, even those labeled "gluten-free" or even "certified gluten-free".   

When first diagnosed, I got so stressed by trying to read so many food package labels (and worrying about the truth of gluten-free label claims or spending too much time during Covid in crowded stores) that I finally just decided to simplify and de-stress my life by avoiding ALL processed, packaged food and buy, cook, and eat 100% natural food: fresh, unseasoned meat (mostly chicken, fish), fruits and veggies and avoid all restaurants  (even those touting gluten-free menus, because they aren't regulated to ensure the truth of their claims of gluten-free menus) and shared utensils, etc., eating food prepared by others (even friends, family) unfamiliar with celiac disease.          

Also, I would recommend she get an updated TTG (gluten) blood test.  If her numbers are STILL high/abnormal, that means she is still getting exposed to gluten and more changes are needed.   If it's normal range, then perhaps her GI symptoms are due to severe, chronic anxiety.  There is a well-established link between severe, chronic stress/depression and GI symptoms and wgt loss.  A great website explaining this in detail is anxietycentre.com.   Perhaps consult a specialist about adjusting her antidepressant meds or seeking ongoing counseling. 

 

[trents]

Kate33 has a good suggestion about getting your wife retested (blood antibody test should be sufficient) but I would wait awhile as she was only diagnosed 6 weeks ago. Retesting would help determine if she is still getting gluten from somewhere on a regular basis.

[Geriatric Newby Caregiver]

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 drawer organizers, everything we could think of. Threw out all the food that was even suspicious.

We checked a lot of things in the medicine cabinets, including cosmetics, but missed the Melatonin. 

 

A tough thing for us is grandkids' kisses (we have 16, plus two great-grands) but the only really dangerous ones are under three, and we will grill their parents to make sure they have not had any donuts or muffins for breakfast before they come over. No gluten-containing snacks are allowed in Grandma's house and we will start baking gluten free stuff when they come. (We already know about grain free black bean brownies).

 

But we need to get Grandma healed a bit first. We appreciate all the support from you all! It is good not to feel so alone.

[trents]

I resonate with the melatonin mistake. I did that one too. They put gluten in things you never suspect.

[GF-Cate]

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

Her doctor seemed totally incredulous--even though he was the one who saw the Celiac sprue.  "That doesn't happen to older people!".  

A lot of doctors are simply not well educated about celiac disease (or other autoimmune diseases). If a person has the genes for celiac, on-set can be triggered at any point in a person's lifetime.

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

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. 

This sounds awful. Please do verify as others have mentioned that the TPN is gluten-free. I don't think many of those products are CGF (certified gluten free), and she may need one that is. Also, a lot of people with celiac or NCGS find they need to avoid dairy as well - either during the healing phase or permanently. It seems like some of the TPN formulas have dairy, so that could be an issue for her. This lists some of the common ones:

https://www.nutritioncare.org/Guidelines_and_Clinical_Resources/EN_Formula_Guide/EN_Adult_Formulas/

A couple of alternatives are:

Liquid Hope: free of gluten, dairy, soy & corn and is CGF (certified gluten free)

https://www.functionalformularies.com/product/liquid-hope/

Kate Farms: free of gluten, dairy, soy, nuts & corn (though not CGF)

https://shop.katefarms.com/collections/tube-feeding-formulas

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

 

 

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

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!

Yes, and as her gut heals and the longer she is off gluten, the more sensitive she may become (this is what I found). It really is a learning curve to figure out all the places gluten hides. More meals from scratch and less packaged food can make this easier (and more time-consuming 🙂 but I have given up counting the hours I spend on food prep!

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

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

My strategy is taking activated charcoal, probiotics and acacia fiber. I only do this in "emergency" situations b/c my understanding is that the activated charcoal interferes with medicine/rx and nutrient absorption. It is also very binding. I take one or 2 charcoal pills for a day or 2, 1Tbsp of the fiber once/day (may want to start with less than that), and 1-2 probiotic capsules 1-2x/day. Drink lots and lots of water with these supplements.

Garden of Life Dr. Formulated Organic Fiber (acacia fiber) - can order online https://www.vitaminshoppe.com/ & others sell it. It is CGF (certified gluten free).

Garden of Life Dr. Formulated Probiotics for Women, Once Daily Women’s Probiotics 50 Billion (CGF)

Country Life Activated Charcoal is CGF

You really have to eliminate any and all sources of gluten to get back to baseline though. If her gut & immune system keep getting triggered by even small or accidental gluten exposures, healing won't happen.

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

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.

Medication ingredients can be a tough issue to tackle because there are no labeling laws and it can be hard to get concrete ingredient/cross contact info from manufacturers. For the thyroid meds, the Swiss company Tirosint manufactures a gluten-free, dye-free, limited ingredient levothyroxine (gel cap) and Tirosint-Sol is a liquid version.

Celiac and Hashimoto's (autoimmune thyroid disease) share a common genetic link, so many people that have one develop the other as well.

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

Do these "accidental exposures" prevent recovery? 

 

Yes. It's a lot of work to avoid, but crucial for stopping the autoimmune response of the body attacking itself.

[Geriatric Newby Caregiver]

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 by a home heathcare nurse. Because she has continues to loose weight (now down to 116 lbs from 187 a year ago) they have increase the intravenous daily volume from 1780 ml to 2200 ml. 

The base formula as printed on each daily bag lists dextrose, plenamine, sterile water, sodium acetate, potassium chloride, potassium phosphate, calcium gluconate,  magnesium sulphate, sodium chloride and three times a week SMO lipid (fats).

Three times a week before administering the bag, I inject into the bag 10 ml of a multivitamin mixture that comes in two  5 ml vials that are different compositionally. 

I do think it is important to check with the TPN pharmacist to make sure that there is absolutely no gluten anywhere in any if the formulations, as the TPN started in the hospital before the diagnosis of celiac sprue..  iI will call on Monday.

Thank you for the recommendation on levothyroxine. I have no idea how to find out if her current prescription is gluten free, but I will call Walgreens to find out if they even know or who the manufacturer is if they do not.

You would think that tge hispital nutritionist who first coached us on eating gluten free would have talked more about checking prescriptions and over-the-counter medications, but they did not (we had the lecture twice).

 

 

 

[trents]

Magnesium sulfate is Epson salt which from antiquity has been used as a laxative.

[RMJ]

1 hour ago, trents said:

Magnesium sulfate is Epson salt which from antiquity has been used as a laxative.

It only works as a laxative when taken by mouth, not via TPN.  It isn’t absorbed well and causes water to be retained in the lumen of the intestines.

[Wheatwacked]

5 hours ago, Geriatric Newby Caregiver said:

10 ml of a multivitamin mixture that comes in two 5 ml vials

Do either have choline or phosphatidyl choline?

[Geriatric Newby Caregiver]

No, it does not. I plan to discuss this with the nutritionist tomorrow.

[Wheatwacked]

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

 

Edited March 21, 2022 by Wheatwacked

[Wheatwacked]

Another similar case:

 

[AlwaysLearning]

I don't have any medical advice to give you, but I hope I can offer some moral support in having shared experience.

I didn't get my diagnosis until I was 42. Before that I had phases where I had symptoms and phases where I did not. In hindsight, it was linked directly to eating out (high gluten) vs. cooking for myself (low gluten). I knew something was wrong, but couldn't get any doctors to believe me.

Things had to get incredibly bad before the cause became more obvious. I had injured my knee and suddenly went from a diet where I cooked for myself to eating out for every meal. I got super sick, and fast. It only took about a month of eating a high-gluten diet for my digestion to stop working. Everything just passed right through. The only digestion that was taking place was in my mouth. 

When I went gluten free, unlike your wife, my digestion got better quickly, but my reactions to gluten became MUCH worse. I became super sensitive and was reacting to super low parts per million, even to foods that were supposed to be gluten free. The analogy I used at the time was that it was as if my body had an army of attackers ready to go after gluten, but because they saw it so rarely, they were itching for a fight and became overenthusiastic in their assault when even trace amounts appeared. But that did eventually ease up.

Someone else here gave an explanation. That army has two components. One component is the fighters, the antibodies that attack gluten (or our own bodies). The other is the military base, the cells that are producing the antibodies. And it takes two years of being gluten free for these little antibody-producing factories to disappear. So you can expect an exaggerated response to gluten, or any protein the overeager army confuses for gluten, for a long time.

I share that so you know you are not alone and so you can have more-realistic expectations. It is not a sprint, but a marathon.

The other massive thing you can do is to go gluten free yourself. If you are eating gluten and then kissing your wife ... 

Check out products other than food. Soap, shampoo, dental appliances (gluten is added to some plastics to make them more flexible). Makeup is AWFUL for containing gluten. 

Though I don't have the expertise of some of the other forum users, one of the thoughts that went through my mind when reading your story is that your wife could probably use some gut flora repair. I don't recommend turning to probiotics like yoghurt or kefir that would likely be too much too fast, rather to start to look for foods that contain naturally occurring probiotic or prebiotic components and introducing them in small amounts. Onions, brocolli, bananas. Mushrooms for fungi. And don't forget yeast. A healthy gut flora has a mix of bacteria, fungus, and yeast, and all are needed to keep the others in check. 

Another idea, though it might not be a good one right now, is to try out nutritional shakes ... but only if gluten free. I mention this because there are options specially formulated for a more-senior audience that are supposed to be gluten and dairy free in addition to being packed with nutrients. Though it might not be something you can turn to right away, it might be a tool in your toolbox in the future. I will admit that I started drinking a shake that was targeted toward seniors when I was in my 20s and was dangerously underweight, and it did help, though at the time, I had no idea it was because it was one of the only gluten-free foods in my diet.

I wish both of you the best of luck and hope that she turns a corner soon. Going gluten free is a challenge and please, do not beat yourself up too badly about making mistakes early on ... or later on. We've all done it.

And pro shopping tip: If the ingredients say "natural flavors", put it back on the shelf.

 

 

[Celiawithceliac1]

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.

[Franhouse]

Hi.  I am 68 years old and last year I just found out that my celiac disease had returned after about 66 years!  I had it for about a year or so when I was 1 year old.  Imagine my surprise! I also had been getting diarrhea on and off; but what tipped me off was the fact that I had pains on both sides of my lower abdomen.  I had been a medical transcriptionist for years and was thinking all kinds of diagnoses.  I called the gastroenterologist and he ordered a CAT scan with contrast of the abdomen and pelvis.  I also had a transvaginal ultrasound.  Nothing significant showed up.  After all of that plus an EGD and colonoscopy (which did not reveal anything major, Thank God), he recommended one more thing - a blood test to see if I had celiac disease.  Well, low and behold after going through all the tests, my celiac numbers were off the charts.  So, I have done as much research as I can and stay away from the obvious - wheat, rye, and barley - and the not so obvious - modified food starch, some emulsifiers, hydrolized wheat protein, malt, and maltodextrin.  I read the labels carefully to make sure that none of these are in any products that I ingest.  My doctor wanted me to see a dietician but they only pay if you're going for diabetes so I just do my own research on what I can eat.  I don't know if this will help you but that's all I have.  Hope you feel better soon.  I have been doing better but I still get bouts of diarrhea.  For example, yesterday, I did some juicing and during the middle of then night, I wound up getting up and running to the bathroom with the runs about 3x.  So go figure.  That's all healthy.  I think it's just old age if you ask me.  lol  Take care.  Fran