T1D, celiac, soy allergy, vegan…who’s with me?

[Tag]

Hi! I’ve been T1D for 37 years, I’ve had Celiac disease for 30 years, undiagnosed for 15 years. I became very ill shortly after getting a flu shot in 1993. I was hospitalized several times, diagnosed with the overused IBS (which is a symptom not a diagnosis). I went on for the next 15 years with a flask filled with pepto bismol and had the dreaded random sulfur burps. After going gluten-free, (including oats, mushrooms and pepper as these caused similar reaction as gluten) I still had constipation and stomach problems, my skin was rashy and itchy and I was sickly(but not as sick as b4 gluten-free). I did an elimination diet and soy was a culprit. However, my skin cleared but I was still constipated. At that point I eliminated all dairy. I continued to eat eggs, and poultry but was still constipated. I decided to go vegan. After 2 days I cleared out what was probably 42 yrs of sh.t. I haven’t been constipated since. In the last 5 yrs I’ve realized I have strawberry, almond & walnut allergy. Good times. 
I feel the healthiest Ive ever been but still suffer from the damage 15 yrs of poison did to me. I know I’ll never feel 100% but I’m grateful I feel 80%.

I’m curious if anyone has T1D and have these post celiac diagnosis allergies.

 Its a challenge to find gluten-free, soy free and vegan products, foods and anything really. I eat fairly clean, and simple diet. Lots of veggies beans herbs fruit and several snack foods for on the go.
 

I do not eat for pleasure and I only eat food I’ve prepared in my own kitchen. It makes managing my diabetes easy. I have to test my glucose and take shots manually as I’m allergic to adhesives so I don’t get all the cool gadgets and gear diabetics have today😑.
 

My house is gluten-free with a husband and 2 teens. They eat what they want anywhere else. These steps took me time to realize but needed to be done to stop being poisoned. 

I hope you are all doing well and on the path for a healthy future. 

[trents]

Welcome to the forum, Tag!

The development other food intolerances/allergies is very common to celiacs. The leaky gut syndrome that accompanies celiac disease is largely responsible for this I believe as it allows larger than normal protein fractions to cross from the gut lining cells into the blood stream where the immune system falsely interprets them as invaders. Not sure it has anything to do with T1 diabetes.

[Scott Adams]

Welcome to the forum! 

I could not tell from your post exactly when you started a 100% gluten-free diet, vs. when you discovered your additional food intolerance issues, but yes, in undiagnosed celiacs such additional food sensitivities are common, and in my case I had ~7 foods I could not eat at the time I was diagnosed.

After diagnosis and treatment with a gluten-free diet many of these additional food sensitivities may go away, and most of mine cleared up during the 1-3 year time period after I went gluten-free, but this may not be true for all celiacs, and some food sensitivities my remain.

[Tag]

21 minutes ago, Scott Adams said:

Welcome to the forum! 

I could not tell from your post exactly when you started a 100% gluten-free diet, vs. when you discovered your additional food intolerance issues, but yes, in undiagnosed celiacs such additional food sensitivities are common, and in my case I had ~7 foods I could not eat at the time I was diagnosed.

After diagnosis and treatment with a gluten-free diet many of these additional food sensitivities may go away, and most of mine cleared up during the 1-3 year time period after I went gluten-free, but this may not be true for all celiacs, and some food sensitivities my remain.

Hi thanks for your response. I’m 47yrs old. I started feeling sick at 18 yrs old. I was lactose intolerant and had a lot of stomach issues. In my 20’s I started getting arthritis and I felt like an 80yr old. I was 33 when I finally found out it was gluten. Once I went gluten-free my lactose intolerance went away. Most of the other food sensitivities/allergies started about a year after. Soy affects me instantly. If I touch it I’m rashy mins after. If it’s cooking, like tappan  style food, I get asthma and a rash for several days. Pepper mushrooms and strawberries I found out about over the last few years so I try to avoid pkg premade foods. 
 

stay well! 

[Flaco]

On 8/28/2022 at 6:10 PM, Tag said:

Hi! I’ve been T1D for 37 years, I’ve had Celiac disease for 30 years, undiagnosed for 15 years. I became very ill shortly after getting a flu shot in 1993. I was hospitalized several times, diagnosed with the overused IBS (which is a symptom not a diagnosis). I went on for the next 15 years with a flask filled with pepto bismol and had the dreaded random sulfur burps. After going gluten-free, (including oats, mushrooms and pepper as these caused similar reaction as gluten) I still had constipation and stomach problems, my skin was rashy and itchy and I was sickly(but not as sick as b4 gluten-free). I did an elimination diet and soy was a culprit. However, my skin cleared but I was still constipated. At that point I eliminated all dairy. I continued to eat eggs, and poultry but was still constipated. I decided to go vegan. After 2 days I cleared out what was probably 42 yrs of sh.t. I haven’t been constipated since. In the last 5 yrs I’ve realized I have strawberry, almond & walnut allergy. Good times. 
I feel the healthiest Ive ever been but still suffer from the damage 15 yrs of poison did to me. I know I’ll never feel 100% but I’m grateful I feel 80%.

I’m curious if anyone has T1D and have these post celiac diagnosis allergies.

 Its a challenge to find gluten-free, soy free and vegan products, foods and anything really. I eat fairly clean, and simple diet. Lots of veggies beans herbs fruit and several snack foods for on the go.
 

I do not eat for pleasure and I only eat food I’ve prepared in my own kitchen. It makes managing my diabetes easy. I have to test my glucose and take shots manually as I’m allergic to adhesives so I don’t get all the cool gadgets and gear diabetics have today😑.
 

My house is gluten-free with a husband and 2 teens. They eat what they want anywhere else. These steps took me time to realize but needed to be done to stop being poisoned. 

I hope you are all doing well and on the path for a healthy future. 

Thanks for the post.  I too am a T1D and have been for 22 years.  I'm also allergic to the CGM adhesives and can't wear them.  My diabetes is in control.  Diagnosed with Celiac two weeks ago. Managing my diet has always been a top priority, but I now think the Celiac diet is way more difficult.  My symptoms were daily nausea and knee pain - causing me to limp.  These symptoms started 9 months ago.   I quit eating gluten two weeks ago and already feel better.  Even my knee is mending.  The day after my diagnosis, an x-ray of my knee showed no damage.  The doc thought it was likely arthritis.  I opted not to have a steroid shot.  Two plus weeks later, my knee is feeling quite normal again.  Amazing. 

Went out for dinner two days ago and even though the waitress said "yeah, they can do it" when asking for no flour dredging on the chicken, she was rather stoic about my concern.  I felt lousy late that night and the next day.  Worst part is that my wife feels like her dining experiences are headed to extinction.  Working around diabetes is ez compared to this.

My biggest concern is about traveling and how I'm going to eat.  Glad this forum is available.  Thank you.

Dennis

 

[trents]

Dennis, indeed, studies show that eating out is the number 1 threat to eating gluten free. No matter what you order from the menu, you have not control over the care with which it is handled in the kitchen needed to keep it from coming in contact with gluten-containing foods or the remnants of gluten containing food in the cooking and stirring, turning, etc. Most newly diagnosed celiacs don't fully comprehend the dangers of CC (cross contamination). Welcome to the forum, by the way. This may help: 

 

 

Edited September 3, 2022 by trents

[Tag]

1 hour ago, dennis yoder said:

Thanks for the post.  I too am a T1D and have been for 22 years.  I'm also allergic to the CGM adhesives and can't wear them.  My diabetes is in control.  Diagnosed with Celiac two weeks ago. Managing my diet has always been a top priority, but I now think the Celiac diet is way more difficult.  My symptoms were daily nausea and knee pain - causing me to limp.  These symptoms started 9 months ago.   I quit eating gluten two weeks ago and already feel better.  Even my knee is mending.  The day after my diagnosis, an x-ray of my knee showed no damage.  The doc thought it was likely arthritis.  I opted not to have a steroid shot.  Two plus weeks later, my knee is feeling quite normal again.  Amazing. 

Went out for dinner two days ago and even though the waitress said "yeah, they can do it" when asking for no flour dredging on the chicken, she was rather stoic about my concern.  I felt lousy late that night and the next day.  Worst part is that my wife feels like her dining experiences are headed to extinction.  Working around diabetes is ez compared to this.

My biggest concern is about traveling and how I'm going to eat.  Glad this forum is available.  Thank you.

Dennis

 

Hi, Dennis,

Thanks for sharing! Transitioning to a celiac diet is not fun. You will likely as most do, have all the stages of grief over your pre celiac diet. The faster you get to acceptance the healthier you will feel. Thankfully(I am assuming) you were diagnosed before any long term damage and arthritis settled in. I have two heberdens nodes on my fingers. They aren’t painful, they’re just ugly. I take my turmeric concoction for any inflammation and it works better than ibuprofen.

As far as eating out at restaurants or family/friends homes, I bring my own meals, utensils, napkins and dishes too. Its a pain in the ass but I feel safe and in the long run it’s not a pain in the ass 😁I sit away from the bread eaters and beer drinkers and never go into the kitchen unless absolutely necessary. I do refuse to go to any restaurant that serves bread or crackers on their tables, any Italian or pizza place or brewery’s. I never sit in between people I always have an end seat and I only sit around ppl I trust. 

Here are places I will not go; sporting events, concerts and anyplace where drinking beer/eating , cheering and flailing about is happening. I don’t drink mainly because I’m more fun without it, but really because it made me hungover before I’d even finish one drink. 

When I travel, I have a whole suitcase filled with essentials like dried goods, canned goods & snacks as well as dishes, cups and utensils. If I’m not traveling far I bring a cooler and bring prepared meals. I also research the area I’m traveling too and look for grocery stores that carry things I can’t travel with and dedicated gluten free restaurants that may be in the area. Vegas has a couple options although I haven’t tried them since they usually use soy in their dishes. Another thing to do is ask if the hotel rooms have a refrigerator. A lot of places will accommodate for diabetics. If not the yeti is fabulous. I traveled across country for 2weeks and only had to replace ice 4 times. 

It seems like extreme planning and thought, it is, but it gets easier and eventually becomes a normal part of planning a trip. Since I’m vegan, my needs are quite limited and easy to manage with lots of veggies and fruits. I only take 14 units of Lantus a day, pre celiac and vegan days I took around 30-40 units. 
 

The stages of my acceptance of celiac disease were drawn out. But once I committed to eating only what I prepare, food has become a necessity not a luxury. It was by no means easy to get here but it has kept me in the best health of my life as a diabetic and celiac, therefor worth it. It would have been worse if my husband and kids were not supportive and understanding. 

Everyone has their own pace for the celiac way of life. I only share my experiences in hopes someone can relate or learn from it, because it is something I wish I had when I started out. 
 

Take care,

Trisha 

 

[Rogol72]

2 hours ago, Tag said:

Hi, Dennis,

Thanks for sharing! Transitioning to a celiac diet is not fun. You will likely as most do, have all the stages of grief over your pre celiac diet. The faster you get to acceptance the healthier you will feel. Thankfully(I am assuming) you were diagnosed before any long term damage and arthritis settled in. I have two heberdens nodes on my fingers. They aren’t painful, they’re just ugly. I take my turmeric concoction for any inflammation and it works better than ibuprofen.

As far as eating out at restaurants or family/friends homes, I bring my own meals, utensils, napkins and dishes too. Its a pain in the ass but I feel safe and in the long run it’s not a pain in the ass 😁I sit away from the bread eaters and beer drinkers and never go into the kitchen unless absolutely necessary. I do refuse to go to any restaurant that serves bread or crackers on their tables, any Italian or pizza place or brewery’s. I never sit in between people I always have an end seat and I only sit around ppl I trust. 

Here are places I will not go; sporting events, concerts and anyplace where drinking beer/eating , cheering and flailing about is happening. I don’t drink mainly because I’m more fun without it, but really because it made me hungover before I’d even finish one drink. 

When I travel, I have a whole suitcase filled with essentials like dried goods, canned goods & snacks as well as dishes, cups and utensils. If I’m not traveling far I bring a cooler and bring prepared meals. I also research the area I’m traveling too and look for grocery stores that carry things I can’t travel with and dedicated gluten free restaurants that may be in the area. Vegas has a couple options although I haven’t tried them since they usually use soy in their dishes. Another thing to do is ask if the hotel rooms have a refrigerator. A lot of places will accommodate for diabetics. If not the yeti is fabulous. I traveled across country for 2weeks and only had to replace ice 4 times. 

It seems like extreme planning and thought, it is, but it gets easier and eventually becomes a normal part of planning a trip. Since I’m vegan, my needs are quite limited and easy to manage with lots of veggies and fruits. I only take 14 units of Lantus a day, pre celiac and vegan days I took around 30-40 units. 
 

The stages of my acceptance of celiac disease were drawn out. But once I committed to eating only what I prepare, food has become a necessity not a luxury. It was by no means easy to get here but it has kept me in the best health of my life as a diabetic and celiac, therefor worth it. It would have been worse if my husband and kids were not supportive and understanding. 

Everyone has their own pace for the celiac way of life. I only share my experiences in hopes someone can relate or learn from it, because it is something I wish I had when I started out. 
 

Take care,

Trisha 

 

If you don't mind me asking, what's in your turmeric concoction that works so well for inflammation? I've tried a turmeric supplement before that has black pepper and it did not agree with me.

[Tag]

24 minutes ago, Rogol72 said:

If you don't mind me asking, what's in your turmeric concoction that works so well for inflammation? I've tried a turmeric supplement before that has black pepper and it did not agree with me.

1/2 cup *raw local honey 

1 tbls turmeric -powder or fresh 

1/2 tbs ginger -powder, fresh, or juiced

1 tsp cayenne pepper -(or black pepper but I can’t have black pepper) 

1 tsp cinnamon 

Mix well.  Take 1 tbls a day with food as the spice can cause a little nausea on an empty stomach. I took 2 x’s a day in the beginning. 

If using fresh ginger or turmeric freeze the whole root and use a fine grater while frozen. 

I find this works really well if you eliminate inflammation triggers while taking it.

*local raw honey helps with environmental allergies. I no longer take allergy meds just xclear nose spray when allergens are high.

**This isn’t medical advice please speak to a professional before hand…yada yada yada : )

I hope this helps. Take care,

Trisha 

 

 

[Cassied0174]

I have many conditions too. When I was 14 I was diagnosed with type one diabetes. At 15 a nurse put my a1c in wrong test and was tested for celiac disease. It was positive and had other tests to make sure. And 16 started breaking out in hives from head to toe. No doctor figured it out and was told it was chronic Urticaria. I started taking Claritin and stopped breaking out. Then 17, on way home with drivers license, I had a seizure. Diagnosed with complex partial seizures. When I was 20 I started breaking out in hives again and figured out the polyester allergy. Staying away and taking either Allegra or zyrtec. And then about 5 yrs ago I started reacting to lactose, which is body reacting like it is gluten. No allergy or intolerance but similarity makes me react to large amounts. I have had two brain surgeries for epilepsy, and they have decreased in severity and frequency. Now it is normally every 5-6months.

[Tag]

21 minutes ago, Cassied0174 said:

I have many conditions too. When I was 14 I was diagnosed with type one diabetes. At 15 a nurse put my a1c in wrong test and was tested for celiac disease. It was positive and had other tests to make sure. And 16 started breaking out in hives from head to toe. No doctor figured it out and was told it was chronic Urticaria. I started taking Claritin and stopped breaking out. Then 17, on way home with drivers license, I had a seizure. Diagnosed with complex partial seizures. When I was 20 I started breaking out in hives again and figured out the polyester allergy. Staying away and taking either Allegra or zyrtec. And then about 5 yrs ago I started reacting to lactose, which is body reacting like it is gluten. No allergy or intolerance but similarity makes me react to large amounts. I have had two brain surgeries for epilepsy, and they have decreased in severity and frequency. Now it is normally every 5-6months.

Thanks for sharing. It sounds like you’ve been on quite the health rollercoaster. I hope you’re seizures fade away completely. How has this all affected your diabetes? I hope you’re doing well.
 

Sometimes I wonder if celiac disease is not a diagnosis but a symptom of something bigger. It seems so many are affected with other health problems. It would be so great to have more research on the causes of autoimmune diseases. The fact they haven’t given a solid cause for T1D is unbelievable and celiac disease is laughed off by some doctors. I had a GI doctor tell me he didn’t believe in celiac disease. He said I had IBS after a colonoscopy. I took my test results to another doctor and he confirmed celiac disease. As well as permanently damaged villi from years of poisoning. 
 

I wish you health and healing,

trisha 

[trents]

50 minutes ago, Cassied0174 said:

And then about 5 yrs ago I started reacting to lactose, which is body reacting like it is gluten. No allergy or intolerance but similarity makes me react to large amounts. 

Lactose is the sugar in milk. If your reaction to dairy mimics your reaction to gluten then I would suspect your are showing intolerance to the milk protein casein rather than lactose. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1810502/

You don't say but may we assume you are scrupulous in your efforts to eat gluten free?