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Bob Healey

Finding certified versions of naturally gluten free products

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2 hours ago, trents said:

Good advice, Kate, about the excessive amount of processed food products the OP is using.

Your admonishment about using the term "refractory" when responding to a newbie post is well-taken but my concern was that after making a serious attempt to eat gluten-free for five months there should have been some improvement in symptoms and blood work. Correct, it does take time for full healing to take place but it seems there has been no progress.

But Bob, let's have some clarification. It's been approximately five months since your diagnosis. Did you plug into the gluten-free eating habits you describe from the get go following diagnosis or has the list of food items you provided been a more recent regimen? Also, how recently was the follow-up blood test done?

Trents, thanks for your response and for taking my points in the spirit in which they were offered...:). 

That said, Bob, there are so many reasons for GI distress, many of which have nothing to do with celiac disease problems or gluten exposure/damage, so I wouldn't automatically jump to the conclusion or assumption that this is the issue here or that you have not had any gut healing since your gluten-free diet attempts.  As I noted, newly developed food intolerances/IBS/SIBO or simply severe anxiety could be in play.  And the latter really does a big number on some folks' guts (certainly mine!).   You seem to have had so much stress in your life over the past 4+ months, what with the new move, attempted changes in diet, etc.  No wonder your body is feeling and reflecting the toll of all that. 

Also, your note above indicates a recent diet of ice cream and mashed potatoes, both typically dairy-based foods and, in the case of ice cream, probably high amount of sugar.  Both are BIG gut irritants for many folks.  Many people suddenly develop many food allergies after an activated celiac disease/gluten sensitivity development.  Try eliminating dairy and sugar for a few weeks and see if that helps.  If not, ask your general or GI doc for referral to a mental health counselor.  No shame in wanting or needing "a little extra help" for handling all this stress now.  celiac disease and food allergies (and this damn pandemic!) have really taken a big toll on ones' sense of mental wellbeing.

Best of luck on your healing journey.  You WILL get through this!     

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3 minutes ago, trents said:

You're having 1-2 BMs per day 30-40 minutes apart but spending 4-5 hours in the bathroom? Do you mean occasionally or regularly? I'm just doing the math here.

Today's been 5 so far, typically 10 in, 30-40 out, repeat over 4-5 hours.  Tomorrow I'll probably have 1 or none, Tues I'll have 0, 1, or 4-5.  This month: 12/1: 1, 12/3: 2, 12/5: 7, 12/6: 1, 12/7: 2, 12/8: 1, 12/10: 1, 12/11: 1, 12/12: 3, 12/13: 4

 

5 minutes ago, Kate333 said:

Trents, thanks for your response and for taking my points in the spirit in which they were offered...:). 

That said, Bob, there are so many reasons for GI distress, many of which have nothing to do with celiac disease problems or gluten exposure/damage, so I wouldn't automatically jump to the conclusion or assumption that this is the issue here or that you have not had any gut healing since your gluten-free diet attempts.  As I noted, newly developed food intolerances/IBS/SIBO or simply severe anxiety could be in play.  And the latter really does a big number on some folks' guts (certainly mine!).   You seem to have had so much stress in your life over the past 4+ months, what with the new move, attempted changes in diet, etc.  No wonder your body is feeling and reflecting the toll of all that. 

Also, your note above indicates a recent diet of ice cream and mashed potatoes, both typically dairy-based foods and, in the case of ice cream, probably high amount of sugar.  Both are BIG gut irritants for many folks.  Many people suddenly develop many food allergies after an activated celiac disease/gluten sensitivity development.  Try eliminating dairy and sugar for a few weeks and see if that helps.  If not, ask your general or GI doc for referral to a mental health counselor.  No shame in wanting or needing "a little extra help" for handling all this stress now.  celiac disease and food allergies (and this damn pandemic!) have really taken a big toll on ones' sense of mental wellbeing.

Best of luck on your healing journey.  You WILL get through this!    

 

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Bob, my feeling is something else besides gluten is causing these bowel issues. Either some other food in your diet or another medical problem. I'm with what others have suggested and would start by eliminating dairy and see if there is any improvement. 

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2 minutes ago, trents said:

Bob, my feeling is something else besides gluten is causing these bowel issues. Either some other food in your diet or another medical problem. I'm with what others have suggested and would start by eliminating dairy and see if there is any improvement. 

This got cut off on my last reply and I missed the edit window:

I had major dental work and was forced on a soft food (nothing that required chewing, nothing that kept its shape after poking it) diet during the 4 weeks it took to complete.  I've been required to eliminate sugar where possible as a result of the dental work.  I need to prove beyond all doubt compliance with the gluten free diet before I can get any further help.  I tried to discuss the labwork, and was shot down with "you have a text book case of celiac, you must go gluten free".  I've eliminated everything in my diet that didn't have the magic words except the list in my original post, and I will eliminate the processed stuff above that did have the magic words.  I can't prove the list in my initial post didn't get cross contaminated at the store though, so I can't prove that it is actually gluten free.

I had eliminated dairy for 2 months last year under doctor's orders, it didn't make a difference.  I was then treated for 4 weeks for SIBO, and life was good until about 6 weeks after I stopped taking the Xifaxen, then my problems came back worse than before.  That was when the celiac panel in march was run. When lock down hit, I had 2-3 good months eating normal foods in my kitchen, till I called my PCP in June about concerns over a trip out of state, a sore throat, and if i should get a covid test; and I was put on amoxicillian, and then things turned bad again.  A month at end of july later I was declared celiac, and nothing's really changed.

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So what I hear you saying is that you feel you are caught between the two horns of a dilemma. The medical community is refusing to explore other potential issues until you get your celiac disease under control and that is escaping you despite extraordinary efforts to eat gluten-free. 

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23 minutes ago, trents said:

So what I hear you saying is that you feel you are caught between the two horns of a dilemma. The medical community is refusing to explore other potential issues until you get your celiac disease under control and that is escaping you despite extraordinary efforts to eat gluten-free. 

Pretty much.  Short of not eating, not sure how I can improve things.  Except for the cheese, which I've cut way back, due to both challenge of finding compliant cheese and not eating as many dishes that use cheese, I am pretty much milk free.  Can't have ice cream anymore due to dental, and I was only using milk to make gluten free muffins.  I used to go through 1-2lbs of cheese per week, now its probably 1-2 oz per week.  Water is my main beverage, but I'll have some a glass of juice 1-2 times per week.

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your Immunoglobulin is high

normal range is 90 - 386

Having too many immunoglobulins in your blood could mean you have allergies or an overactive immune system

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6 hours ago, Bob Healey said:

Today's been 5 so far

 

 

I'm the opposite.. I go once in the morning..  

My Dr was surprised..  he said he was expecting me to be going 3 - 5 times a day with the amount if inflammation i had at diagnosis..

 

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Hi Bob,

It's not typical for a celiac patient to be put on an immune suppressor for GI symptoms.  The exception would be refractory celiac disease.  But a diagnosis of refractory celiac disease is not considered until all other possible issues are eliminated.  Things like cheating on the gluten-free diet, or unknown cross contamination etc.  And continued high gliaden antibody tests even after a considerable time on the gluten-free diet would be another criteria for considering refractory celiac.  It seems like your doctor jumped straight to immuno-suppressive treatment for some unknown reason?  Unknown to us at least and maybe to you also.

Villous blunting is a good reason to be dairy free.  The villi make the enzyme lactase that digests dairy sugar.  Without the enzyme things don't go well when eating dairy.  You can get Lactaid type digestive enzymes to help with digesting dairy.


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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I didn't even know it was immunosupressant until a few days after I started taking it and mentioned it to my mother, a retired RN. I was just told it might help, and I'd be on it 6-9 months and once I started it I couldn't stop it without completing the entire course of treatment. I am not comfortable or happy being on an immonsupressant while working at a college in an area seeing a sharp uptick in covid cases. I'm trying to prove I'm not knowingly cheating by eliminating *everything* not sold as gluten free.

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If you haven't already done so, it's time to keep a detailed food diary, as you may have additional intolerance. Stop eating oats if you do eat them, and consider eliminating soy, eggs, dairy, and nightshades, etc., or at least rotate them--stop for a few weeks, then add them back and record what happens. 


Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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23 minutes ago, Bob Healey said:

I didn't even know it was immunosupressant until a few days after I started taking it and mentioned it to my mother, a retired RN. I was just told it might help, and I'd be on it 6-9 months and once I started it I couldn't stop it without completing the entire course of treatment. I am not comfortable or happy being on an immonsupressant while working at a college in an area seeing a sharp uptick in covid cases. I'm trying to prove I'm not knowingly cheating by eliminating *everything* not sold as gluten free.

Essentially all meds that address autoimmune diseases will be immunosuppressants. There's just no other way to do it at this time.

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15 hours ago, Bob Healey said:

Pretty much.  Short of not eating, not sure how I can improve things.  Except for the cheese, which I've cut way back, due to both challenge of finding compliant cheese and not eating as many dishes that use cheese, I am pretty much milk free.  Can't have ice cream anymore due to dental, and I was only using milk to make gluten free muffins.  I used to go through 1-2lbs of cheese per week, now its probably 1-2 oz per week.  Water is my main beverage, but I'll have some a glass of juice 1-2 times per week.

No disrespect intended but since you are STILL eating cheese, you are still consuming dairy.    Everyone is different, but if you have developed a dairy intolerance/allergy you cannot just "cut back" on it or skip a few days (same applies to gluten or any other allergen) and expect your GI system and function to heal and normalize. You have to eliminate it COMPLETELY, probably for several weeks, before you will notice a difference.  Esp. true if you have a super-sensitive stomach.  Also, re: SIBO.  Unfortunately, it has a fairly high relapse rate.  Many people respond well to Rifaximin initially but then notice GI symptoms return a few weeks or months later, esp. if they stop taking it early and/or resume old diet habits.

I would ask your GI docs for a repeat TTG test to make sure you still aren't getting exposed to gluten.  If you are still eating ANY packaged food, odds are you are still getting gluten.    It looked like your last TTG number was pretty normal? so more likely dairy, other food allergies and/or stress are messing your gut up.   Another remote (but not impossible) possibility is that the company that makes, processed, and packed your cheese before it reached the store includes gluten as a hidden filler ingredient (or spices, artificial flavors, which can also irritate a sensitive gut).  Or perhaps gluten somehow got mixed in if the same machines are used to process both cheese and traditional gluten products.  If you are unwilling to give up cheese, at least try a new brand and see if that makes any difference.   Someone else here suggested Lactaid.  Personally I've found it (and even "dairy-free"-labeled products) useless and ended up having to ditch all dairy.   I plan to try dairy again later, after I've had time to heal.

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4 hours ago, Kate333 said:

...Someone else here suggested Lactaid.  Personally I've found it (and even "dairy-free"-labeled products) useless and ended up having to ditch all dairy.   I plan to try dairy again later, after I've had time to heal.

That were me! :)

Lactaid has lactase in it, and helps digest dairy sugar, lactose.  Lactase does not do anything helpful towards digesting dairy proteins, like casein and whey.  So if Lactaid doesn't help your dairy issue, it is probably a dairy protein problem.  I have seen casein as an ingredient in some foods that are labeled dairy-free.  Foods should not be labeled dairy-free if they contain a dairy protein IMHO.  But my IMHO doesn't set the rules.


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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4 hours ago, GFinDC said:

That were me! :)

Lactaid has lactase in it, and helps digest dairy sugar, lactose.  Lactase does not do anything helpful towards digesting dairy proteins, like casein and whey.  So if Lactaid doesn't help your dairy issue, it is probably a dairy protein problem.  I have seen casein as an ingredient in some foods that are labeled dairy-free.  Foods should not be labeled dairy-free if they contain a dairy protein IMHO.  But my IMHO doesn't set the rules.

Amen!!  Big Agri & the politicians they own, lock, stock and barrel "set the rules".😖  Why else do so many of these companies still get away with labelling so many of their products, menu items, restaurants "gluten-free" for marketing purposes (and misleading & endangering Celiacs) when, in fact, there is a very high probability that they AREN'T!!!  Not speaking of "certified gluten-free" here...which I honestly still don't trust; but then celiac disease has admittedly made me a bitterly paranoid former food lover!!  I used to LOVE eating, esp. dairy...Now, honestly just the thought of eating at all sometimes makes me so sad because what used to be a source of sheer pleasure has become such an exercise in complexity and often frustration (probably typical of "newbies" still trying to learn and heal). 

BTW, GFinDC, what do you eat INSTEAD of dairy for calcium?  Can you suggest any casein/whey food products/substitutes that seem like cheese, have high calcium, but don't taste like sheer💩💩?? 

Apologies for the political rant, but it's getting very late, I'm tired, and sometimes I just feel the compulsion to vent about "life, the world" etc.!!  I guess that comes from spending over a year obsessing/worry about damn TTG lab scores, BMs, food paranoia, toilet paper shortages and a damn  pandemic to top it all off!!!!!😖😤😱😭.  Sometimes I wish to God I could just wake up from this nightmare and find that celiac disease and this pandemic were all nothing more than a VERY WEIRD BAD DREAM... Sigh... 

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7 hours ago, Kate333 said:

Amen!!  Big Agri & the politicians they own, lock, stock and barrel "set the rules".😖  Why else do so many of these companies still get away with labelling so many of their products, menu items, restaurants "gluten-free" for marketing purposes (and misleading & endangering Celiacs) when, in fact, there is a very high probability that they AREN'T!!!  Not speaking of "certified gluten-free" here...which I honestly still don't trust; but then celiac disease has admittedly made me a bitterly paranoid former food lover!!  I used to LOVE eating, esp. dairy...Now, honestly just the thought of eating at all sometimes makes me so sad because what used to be a source of sheer pleasure has become such an exercise in complexity and often frustration (probably typical of "newbies" still trying to learn and heal). 

BTW, GFinDC, what do you eat INSTEAD of dairy for calcium?  Can you suggest any casein/whey food products/substitutes that seem like cheese, have high calcium, but don't taste like sheer💩💩?? 

Apologies for the political rant, but it's getting very late, I'm tired, and sometimes I just feel the compulsion to vent about "life, the world" etc.!!  I guess that comes from spending over a year obsessing/worry about damn TTG lab scores, BMs, food paranoia, toilet paper shortages and a damn  pandemic to top it all off!!!!!😖😤😱😭.  Sometimes I wish to God I could just wake up from this nightmare and find that celiac disease and this pandemic were all nothing more than a VERY WEIRD BAD DREAM... Sigh... 

Hi Kate,

I take calcium supplements.  One is Lifetime Calcium, magnesium, potassium Vitamin D and Boron.  it doesn't contain large amounts of calcium but has other things in it that I like to get.  I also take a calcium citrate + D3 pill from CVS.  I am sure there are better calcium pills around but CVS was cheap.  So I don't depend on foods for my calcium intake.  I do eat tinned sardines/salmon sometimes which has bones that are good for calcium though.

For cheese I eat Daiya cheese like substance.  It is one of the few cheese substitutes that doesn't have casein in it.  I am not claiming it is the best tasting product.

I do have cashew almond milk sometimes.  And Cashew or coconut milk ice cream subs.  But i don't think those have much calcium in them.

I had some hip pain for awhile and added calcium pills and vitamin D and boron pills.  After a few months of the added calcium, V-D and Boron the hip pain faded away.  So I do think its important to get some of those in your body.

 


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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On 12/13/2020 at 10:47 PM, Bob Healey said:

...

I had eliminated dairy for 2 months last year under doctor's orders, it didn't make a difference.  I was then treated for 4 weeks for SIBO, and life was good until about 6 weeks after I stopped taking the Xifaxen, then my problems came back worse than before.  T

Hi Bob,

I hope you do try being totally dairy free again.  It may make quite a difference.  But don't be surprised if it takes several weeks to see improvement.  Being dairy free after starting gluten-free is different than going dairy free while eating gluten.  I know you have cut down on dairy recently but if it is a dairy protein problem then a total elimination is needed for improvement.  Proteins are involved in allergic reactions.  So even a small amount can be a trigger for the immune system.  Lactaid doesn't help with dairy protein, it just helps with dairy sugar/carbohydrate.

I guess it makes sense to try the lactaid first to see if it helps.  But if there is on improvement after a week I'd suggest trying total dairy elimination.  

Edited by GFinDC

Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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On 12/14/2020 at 12:15 PM, Bob Healey said:

I didn't even know it was immunosupressant until a few days after I started taking it and mentioned it to my mother, a retired RN. I was just told it might help, and I'd be on it 6-9 months and once I started it I couldn't stop it without completing the entire course of treatment. I am not comfortable or happy being on an immonsupressant while working at a college in an area seeing a sharp uptick in covid cases. I'm trying to prove I'm not knowingly cheating by eliminating *everything* not sold as gluten free.

Bob,

I believe you are not cheating.

"Maize Prolamins Could Induce a Gluten-Like Cellular Immune Response in Some Celiac Disease Patients"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3820067/

"Maize is one of the most commonly consumed grains in the gluten-free diet. Despite the low content of zeins in maize-containing foods compared with that of gliadins in wheat-containing foods, maize could be responsible for persistent mucosal damage in a very limited subgroup of celiac disease patients. If our hypothesis is proven, zeins could be classified as harmful for some celiac disease patients, especially those showing a poor response to a gluten-free diet."

 

"Mucosal reactivity to cow's milk protein in coeliac disease"

https://pubmed.ncbi.nlm.nih.gov/17302893/

"A mucosal inflammatory response similar to that elicited by gluten was produced by CM protein in about 50% of the patients with coeliac disease. Casein, in particular, seems to be involved in this reaction."

 

Not everything is cross contaminated.  Somethings cause problems for Celiacs.

Try the Autoimmune Paleo Protocol diet. It works in reducing inflammation and getting those test numbers down.  

Take a B 100 Complex vitamin and Vitamin D.

And keep a Food/Mood/Poo'd Journal!  Scott is right. 

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