Ending a gluten free diet

[trailblazer02]

I have Celiac Disease (celiac disease) follow a strict gluten-free diet; however, my concern is for our son and one of his twin sons. Just a little background: one of my twin grandsons was diagnosed Type 1 diabetic at about 2 years old and not too long after, the other twin was diagnosed with celiac disease. A couple of years later, their father (our son) was diagnosed with celiac disease. Next, I was diagnosed with celiac disease a couple of years after that. Not surprisingly, the older first son of our son was diagnosed with celiac disease. That son is a nurse and takes care of himself, as far as we know. Now we find out that our son and his twin son with celiac disease have decided together that they are no longer going to eat gluten-free because they feel they have no symptoms. We also know that the two of them have cheated a lot on their gluten-free diet. Our daughter saw her brother eating a stack of pancakes one time. He has told us he does not mind the diarrhea and we are guessing that his son feels the same way. What is odd to us is that the wife of our son is a pharmacist and does not seem concerned. My question is: what can we expect the future of our son and grandson to be in regards to their health?

[GFinDC]

Hi Trailblazer,

No one can say for sure what will happen, but we can make some guesses.   Celiac disease can affect people in many different ways, and there is no guarantee how it will affect a person.

One of the problems untreated celiac disease can cause is malabsorption of nutrients.  This can cause stunted growth and poor development of teeth and bone and brain.  Ongoing consumption of gluten by a celiac can result in continual inflammation in the GI system.  This can cause additional food intolerances to develop over time.  Some of mine are dairy, nightshades, soy, strawberries, celery, oats, etc, etc.  Other people have other food intolerances that crop up.  These are sometimes lifetime food intolerances.

Another biggie is gluten ataxia which can be caused by brain damage.  Dermatitis herpetiformis (DH) is a skin condition that can happen and is not very pleasant to experience.

There is a low chance of gut cancer also.

There's also the potential for ongoing GI distress including pain, bloating, C and D, insomnia, brain fog, hair loss, low hormone levels, mental symptoms like anger, depression etc, joint pain, developing other AI conditions and just plain feeling miserable for years on end.

The alternative is to go gluten-free and enjoy better health and live well.  And most likely end up eating a healthier diet than most people do.

Celiac disease is an AI (auto-immune) condition.  It's a lifelong immune condition that doesn't go away.  Every time they eat gluten they are damaging their bodies.  Eventually that damage won't be repairable and problems will get worse.  There is no upside for a celiac to continue eating gluten.

[Ennis-TX]

This disease is like a chameleon always changing, in regards to the above issues, I have my list of NO foods I can not eat anymore, I became allergic to Corn and whey, and ended up with various intolerances/sensitivities from peanuts, lactose, soy, etc. I also got other AI issues like Ulcerative Colitis, which flares to gluten, spices, and sugars/carbs. I ended up with gluten ataxia in which my immune system will also attack my brain and nervous system. It as taken over 6 years gain some feeling back in my hands, I lost the ability to do some more advanced stuff I went to college for (computer programming) because it all jumbles up when I look at it now....like I should know it but I do not. There were secondary effects of it doing something with my pancreas, I can not have any carbs or sugars without spiking my glucose to dangerous levels, and I have to take pig pancreas enzymes and digestive enzymes to eat my food and still can not have anything oily, or greasy. 

Now on to others issues, we have seen members get ruptured intestines and need a colostomy bag, we have lost members to cancer also. The list goes on. Antibodies can stay raised for months after an exposure constantly dealing damage inside, so cheating every now and then is not just 1-2 days of damage. Everyone is different but if they keep cheating the complications, other foods issues, other AI diseases all become more likely with time. 

[cyclinglady]

I understand your concern for your son and your grandchild.  Your son is an adult.  It is his choice whether or not to treat his celiac disease.  Some celiacs do not follow treatment.  My own PCP has two other celiac patients (out of 2,000+) who refuse to do the diet.  It is hard for most of us here to imagine that, but it is true.  Like an alcoholic or a drug addict, only the person with the affliction can make that choice.  

Now, working with kids, I am a mandated child protection reporter by law.  You did not disclose your grandchild’s age, but if he is under 18, he deserves protection.  You might have a discussion with your own doctor who is also a mandated reporter.  He or she can at least can give you some direction based on the laws in your state.  

I assume your son and wife are giving insulin to their diabetic child.  Hard to imagine they are not treating their second child who also has a serious autoimmune disease like his brother.  

I hope you can figure it out.  

 

[kareng]

Is the grandchild a minor?  If so, that would be medical neglect and he could lose how child

[Awol cast iron stomach]

I am sorry to hear this challenging situation for you. My diagnosis took longer than usual same with my cousin. Similar to the posters above I share multiple intolerances etc as they say. DH, ataxia, and while my Dr was a MCAS expert I am not diagnosed as such, I get symptoms of it in addition to my DH/ataxia/malapsorbtion stuff. a cc exposure causes all kinds of havoc on me affecting my mast cells as I struggle to keep my heart rate, blood pressure, and blood sugar stable to avoid hypoglycemia afterward. This has been a struggle over the last 3-4 years as I have been managed out of one job, lost scheduled hours at another, and struggle to appear healthy enough at my current job. I have to accept the limitations of my situation. 

My cousin is celiac and I am DH, our hereditary side that this is found on has a medical history of gallbladder removal, colon cancer, and diabetes in our family members. She and then myself have expressed our concern that we seem to have family gluten issues and tend to be hard to diagnose. We always encourage our family members to tell their docs. In the end we have to respect the choices made by adults who choose not to be tested or follow the diet. 

I hope the grandchild is not a kid if so as others said you may have to respectfully intervene for a child can t make an informed decision regarding this.

So in closing it impacts a lot, my delay in diagnosis caused additional challenges /complications delivering my children, limits me in the workforce,  I am grateful to be employed, but my body and immune system are part of my everyday life that the choices and decisions I make include keeping my condition in mind. I also see and pay out of pocket for alternative dr, acupuncturist etc to manage my condition.  I have done this long before I was diagnosed as I knew something was up, but didn't know exactly what, and helped my body manage best I could.t

I am lucky as My body constantly communicated what was right and wrong and other then DH/multiple intolerances, I am subclinical on all other AI's and issues. Although I get symptoms of others from time to time. I am hopeful I can keep that one diagnosis and avoid others that are more pharmacological or serious.

in my opinion, Set the boundary in your home gluten will not be offered etc to the celiac grand kid. That will send the message that you believe and up hold the diagnosis. My opinion your son is in denial and struggling to accept this lifestyle change.

in the end the body will communicate even to the most stubborn . I firmly believe this. It is up to the person to heed this information.

 

best wishes to you all and Good luck

[lfortson]

On ‎05‎/‎23‎/‎2019 at 5:29 AM, Ennis_TX said:

This disease is like a chameleon always changing, in regards to the above issues, I have my list of NO foods I can not eat anymore, I became allergic to Corn and whey, and ended up with various intolerances/sensitivities from peanuts, lactose, soy, etc. I also got other AI issues like Ulcerative Colitis, which flares to gluten, spices, and sugars/carbs. I ended up with gluten ataxia in which my immune system will also attack my brain and nervous system. It as taken over 6 years gain some feeling back in my hands, I lost the ability to do some more advanced stuff I went to college for (computer programming) because it all jumbles up when I look at it now....like I should know it but I do not. There were secondary effects of it doing something with my pancreas, I can not have any carbs or sugars without spiking my glucose to dangerous levels, and I have to take pig pancreas enzymes and digestive enzymes to eat my food and still can not have anything oily, or greasy. 

Now on to others issues, we have seen members get ruptured intestines and need a colostomy bag, we have lost members to cancer also. The list goes on. Antibodies can stay raised for months after an exposure constantly dealing damage inside, so cheating every now and then is not just 1-2 days of damage. Everyone is different but if they keep cheating the complications, other foods issues, other AI diseases all become more likely with time. 

I am interested in your comments about losing your memory.  I have Celiacs and IBS, etc.   Very difficult to eat a healthy diet.  One goes against the other.  The past year I have noticed a marked difference in my memory and was very concerned about it because my mother had Alzheimer's.  I had a brain scan but that is not the problem at least it doesn't show up on the MRI.  All of my blood enzymes are way out of line for my size and I'm thinking it's the diet and inability to do extensive exercise. I have back issues, and nerve issues in my spine (one spinal fusion and probably another on the horizon).  Three of my siblings have Celiacs and other auto immune diseases.  They can destroy your body.  The brain fog is really a concern for me right now.  I have just retired because I felt that I wasn't as sharp as I needed to be to handle the job requirements I had been doing for 30 years. It's just gotten worse. I understand just a little what you're going thru.  I don't have a gallbladder and no oily greasy foods for me either.  They just don't digest at all.  I can't eat salads or any type of greens in my diet because of the IBS.  Do you know of any type of enzymes that help with that issue.  lfortson

[Ennis-TX]

2 hours ago, lfortson said:

I am interested in your comments about losing your memory.  I have Celiacs and IBS, etc.   Very difficult to eat a healthy diet.  One goes against the other.  The past year I have noticed a marked difference in my memory and was very concerned about it because my mother had Alzheimer's.  I had a brain scan but that is not the problem at least it doesn't show up on the MRI.  All of my blood enzymes are way out of line for my size and I'm thinking it's the diet and inability to do extensive exercise. I have back issues, and nerve issues in my spine (one spinal fusion and probably another on the horizon).  Three of my siblings have Celiacs and other auto immune diseases.  They can destroy your body.  The brain fog is really a concern for me right now.  I have just retired because I felt that I wasn't as sharp as I needed to be to handle the job requirements I had been doing for 30 years. It's just gotten worse. I understand just a little what you're going thru.  I don't have a gallbladder and no oily greasy foods for me either.  They just don't digest at all.  I can't eat salads or any type of greens in my diet because of the IBS.  Do you know of any type of enzymes that help with that issue.  lfortson

For the fog and memory, it can be many things, the brain requires certain ratios and amounts of fat to function, it also requires b-vitamins the full spectrum among other amino acids, minerals and vitamins, nerve functions require magnesium, potassium and other things to fire right. 
Celiac can hamper the ability to break down and absorb nutrients, digestive issues and enzymes can further complicate this, and trying to eat the right ratios of foods. I supplement with Liquid Health Mega B-complex (formally Energy & Stress), and Liquid Health Neurological Support 1tbsp each 2-3times a day with meals. I also take magnesium, vitamin D, and managed most everything else with diet. 

As to the damage, if you had ataxia damage it would show up on the MRI as white marks, I can not say for certain but I think yours might be more nutrient and diet related. I might suggest a food diary and rotate around your foods. Maybe another food is causing issues or your not getting enough of something.  With my celiac I grew thinking all the other issues were normal the ataxia made me think I was dying, it was not just a fog, it was forgetting things I should know (other languages, computer programing to simple everything things like opening a door by turning the handle and I would just stare at it), looping thoughts were I got stuck with one line of thought in my head and could not move on like a broken record to the point of banging my head on a wall to make it stop. I lost feelings of hot and cold, became numb to most pain, I would mess up trying to hold or pick up something or handle something like a real klutz. Later exposures after going gluten-free hit me like a hammer and I lost all motor control and collapsed on the floor unable to move.

I did a post on enzymes awhile back, but what you need is directly determined by what ratios you eat. I use various brands and blends and take them in ratios to what I eat. Realzymes makes diet targeted blends, I also take the pancreas enzymes from jarrow, and if I eat something a bit heavy I get the high lipase one for breaking down fats from Enzymepedia. Enzymes in the right ratios might mean eating some foods again in moderation if cooked to be super tender and not excessive in toughness or greasy.
https://www.celiac.com/forums/topic/119919-digestive-enzymes/

I have an issue with greens myself, I dry my collards, or kale then grind into a powder and mix them in dishes or just down a green shot with warm liquid. I wilt and blend spinach into recipes, and steam other veggies til almost mush. Some I must eat in moderation for starch/carb/ issues that bother my UC, like cabbage, carrots, tomatoes, peppers, etc. While some I can not eat at all for no reason. I think this falls into ease of digestion and the Intolerance/sensitivity category

As to something that might help your IBS, I use Aloe Vera inner fillet juice, Slippery Elm Powder, and Marshmallow root powder to help keep my Ulcerative Colitis in check along with diet avoiding MY triggers of fructose/glucose/starches/spices/alcohol etc.  Sorta had to as I could not afford the RX for treating it. My last scopes showed complete healing. But everyone is different finding what works for you and your triggers will take time.
 

 

[GFinDC]

Hi Lfortson,

I assume you are on the gluten-free diet?  So no wheat, rye or barley?  That's good, but there are about 10% of celiacs who react to oats also.  So you might want to get rid of oats for several months and see if things improve.

Another somewhat common food issue is dairy.  Some people can't digest lactose (cow milk sugar), and some can't digest casein (cow milk protein).  So it might help to eliminate all dairy for several months also.  Almond milk is a possible substitute.  Please don't do soy milk though.  Soy is one of the top 8 allergens so a lot of people react to it.

Probably the best way to identify foods that cause reactions is with an elimination diet.  Cut down to 5 foods only for a week and then add one new "test" food for 3 days.  If it doesn't work then stop eating the tested food.  Start over or rinse and repeat as they say.  There aren't many medical tests for food intolerances so the best test is how our bodies react.