Gluten Free Lifestyle

[dogmom94]

Hello all!

I'm not technically Celiac diagnosed, but my journey started a few years ago when I started developing a rash on my leg. I would notice that it left little blisters full of a yellowish liquid and it would really itch. I ignored it and within a few years it was worse - to the point that I itched patches of skin off of my legs. I finally got tests and found out that I'm allergic to wheat, rye, oat, and several other items. 

Since going gluten free - the rash and the itching has basically stopped. I find it difficult at times to find items that I can eat as a lot of gluten free products still use oats. I've also been noticing a lot of blood sugar crashing throughout the day. My lowest Blood sugar reading was 66 and I just tested at 69 tonight. 

 

My questions - 

 

1) Has anyone else exhibited the same symptoms such as the rash/blisters? 

 

2) How do I stop my Blood Sugar from crashing so completely. I feel useless while I'm trying to force food into my mouth because I feel terrible, shaking, and can't function. 

 

3) Does anyone have any recipes or know of any sites that would be of help when I'm trying to bake my own things?

 

Thanks!

[trents]

Welcome to the forum, dogmom94!

The rash you describe sounds very much like DH (Dermatitis Herpetiformis) and celiac disease is the only known cause for it. It is a classic symptom of celiac disease but only some celiacs experience it.

Why do you avoid oats? Do you get a gluten-like reaction to them? About 10% of celiacs react to gluten free oats like they do gluten. The protein (avenin) in oats is similar in structure to wheat/barley/rye gluten.

My only suggestion at this point with regard to your hypoglycemic episodes is to void carbs as much as possible. Taylor your eating to focus on foods low in carbs, high in protein and fats. Protein and fat satisfy and have staying power against hunger in contrast to carbs.

You do not mention that you are a diabetic so I assume overdosing with insulin can be ruled out as a cause of your hypoglycemia. But there are some medical problems that can cause your pancreas to produce too much natural insulin: https://www.mayoclinic.org/diseases-conditions/hypoglycemia/symptoms-causes/syc-20373685

Insulin overproduction. A rare tumor of the pancreas (insulinoma) can cause you to produce too much insulin, resulting in hypoglycemia. Other tumors also can result in too much production of insulin-like substances. Unusual cells of the pancreas that produce insulin can result in excessive insulin release, causing hypoglycemia.

Hormone deficiencies. Certain adrenal gland and pituitary tumor disorders can result in an inadequate amount of certain hormones that regulate glucose production or metabolism. Children can have hypoglycemia if they have too little growth hormone.

You might ask your doctor about some of these possible causes for hypoglycemia.

[dogmom94]

1 hour ago, trents said:

Welcome to the forum, dogmom94!

The rash you describe sounds very much like DH (Dermatitis Herpetiformis) and celiac disease is the only known cause for it. It is a classic symptom of celiac disease but only some celiacs experience it.

Why do you avoid oats? Do you get a gluten-like reaction to them? About 10% of celiacs react to gluten free oats like they do gluten. The protein (avenin) in oats is similar in structure to wheat/barley/rye gluten.

My only suggestion at this point with regard to your hypoglycemic episodes is to void carbs as much as possible. Taylor your eating to focus on foods low in carbs, high in protein and fats. Protein and fat satisfy and have staying power against hunger in contrast to carbs.

You do not mention that you are a diabetic so I assume overdosing with insulin can be ruled out as a cause of your hypoglycemia. But there are some medical problems that can cause your pancreas to produce too much natural insulin: https://www.mayoclinic.org/diseases-conditions/hypoglycemia/symptoms-causes/syc-20373685

Insulin overproduction. A rare tumor of the pancreas (insulinoma) can cause you to produce too much insulin, resulting in hypoglycemia. Other tumors also can result in too much production of insulin-like substances. Unusual cells of the pancreas that produce insulin can result in excessive insulin release, causing hypoglycemia.

Hormone deficiencies. Certain adrenal gland and pituitary tumor disorders can result in an inadequate amount of certain hormones that regulate glucose production or metabolism. Children can have hypoglycemia if they have too little growth hormone.

You might ask your doctor about some of these possible causes for hypoglycemia.

Thank you so much! Unfortunately, the allergist was unable to test me using scratch tests due to the high reactivity and contact hives at that point. Oats came up as a 100% for reaction, even though I miss them so much. I tried to eat gluten-free Oreos, ended up with another rash due to the oat flour used in them. 

I don't eat enough protein, so I will have to change that. Maybe that will help with the hypoglycemia. I am not diabetic, but have an increased risk for Diabetes from genetics. I do eat a lot more sugar than I should though. 

[newtonfree]

9 hours ago, dogmom94 said:

Thank you so much! Unfortunately, the allergist was unable to test me using scratch tests due to the high reactivity and contact hives at that point. Oats came up as a 100% for reaction, even though I miss them so much. I tried to eat gluten-free Oreos, ended up with another rash due to the oat flour used in them. 

I don't eat enough protein, so I will have to change that. Maybe that will help with the hypoglycemia. I am not diabetic, but have an increased risk for Diabetes from genetics. I do eat a lot more sugar than I should though. 

Have you been tested for celiac disease itself? Anti-tTG, gastroscopy with duodenal biopsy, things like that?

Dietary wheat allergy and celiac disease are very different, but both respond of coursr to a GFD. Has a dermatologist taken a look at your rash?

I'm one of those lucky celiacs with DH, and I certainly think you need to have your rash looked at and celiac disease/DH considered.

I will give slightly different advice than trents regarding macronutrients. Avoiding carbs is not something I've ever believed in as a doctor (they're the basis of virtually all basic cellular metabolism), but I very much do believe in minimizing simple carbs like sugar, and high-GI (glycemic index) complex carbs like refined white rice, corn starch, etc.

Blood sugar of 66-69 is not what we would generally consider dangerous in a healthy person (i.e. someone who is not on insulin and doesn't have any other health issues affecting insulin). A value of 70 is considered the low end of normal for a fasting blood sugar, but normal values are simply determined by looking at the bell curve of average people and taking the middle 80%. That means that 10% of normal, healthy people will lie outside of it. A blood sugar of 54-56 is where we get seriously concerned about danger.

That's not to say that you wouldn't feel lousy at 66-69. Lots of people feel faint, weak, nauseated, shaky, or otherwise crappy when they've gone too long without eating, myself included. It's just not due to what we'd call hypoglycemia, which is specific to insulin overdose or metabolic disorders that can cause life-threateningly low blood sugar. We reserve that term for those cases, but people do colloquially refer to a normal fasting blood sugar with symptoms of under-eating as "hypoglycemia," so it can be confusing.

Eating enough protein and healthy fats along with low-GI carbohydrates is definitely the way to avoid that crashing feeling for most people, as is a switch to smaller, more frequent meals. Some people only eat two giant meals per day, and feel lousy in between them. Splitting up the same number of calories into multiple, smaller meals and frequent snacks can often keep people feeling better-fueled. And speaking of calories, have you tracked how much you're actually eating? While many people struggle with eating too much if they're unmonitored, you'd be surprised how many struggle with eating too few. Sometimes people mistake "not losing weight" for "eating enough." The body can downregulate its metabolism when facing a state of calorie restriction, which leaves people feeling downright lousy, even if their weight is stable.

It's been well-established that people on restricted diets (including GFD and allergy-related elimination diets) can not only be deficient in micronutrients like vitamins and minerals, but also in calories themselves, so it's worth taking stock of your overall diet and checking whether you're getting enough of both micronutrients and macronutrients (and if you're properly absorbing those micronutrients, which is a serious issue for people with things like celiac disease).

[dogmom94]

4 hours ago, newtonfree said:

Have you been tested for celiac disease itself? Anti-tTG, gastroscopy with duodenal biopsy, things like that?

Dietary wheat allergy and celiac disease are very different, but both respond of coursr to a GFD. Has a dermatologist taken a look at your rash?

I'm one of those lucky celiacs with DH, and I certainly think you need to have your rash looked at and celiac disease/DH considered.

I will give slightly different advice than trents regarding macronutrients. Avoiding carbs is not something I've ever believed in as a doctor (they're the basis of virtually all basic cellular metabolism), but I very much do believe in minimizing simple carbs like sugar, and high-GI (glycemic index) complex carbs like refined white rice, corn starch, etc.

Blood sugar of 66-69 is not what we would generally consider dangerous in a healthy person (i.e. someone who is not on insulin and doesn't have any other health issues affecting insulin). A value of 70 is considered the low end of normal for a fasting blood sugar, but normal values are simply determined by looking at the bell curve of average people and taking the middle 80%. That means that 10% of normal, healthy people will lie outside of it. A blood sugar of 54-56 is where we get seriously concerned about danger.

That's not to say that you wouldn't feel lousy at 66-69. Lots of people feel faint, weak, nauseated, shaky, or otherwise crappy when they've gone too long without eating, myself included. It's just not due to what we'd call hypoglycemia, which is specific to insulin overdose or metabolic disorders that can cause life-threateningly low blood sugar. We reserve that term for those cases, but people do colloquially refer to a normal fasting blood sugar with symptoms of under-eating as "hypoglycemia," so it can be confusing.

Eating enough protein and healthy fats along with low-GI carbohydrates is definitely the way to avoid that crashing feeling for most people, as is a switch to smaller, more frequent meals. Some people only eat two giant meals per day, and feel lousy in between them. Splitting up the same number of calories into multiple, smaller meals and frequent snacks can often keep people feeling better-fueled. And speaking of calories, have you tracked how much you're actually eating? While many people struggle with eating too much if they're unmonitored, you'd be surprised how many struggle with eating too few. Sometimes people mistake "not losing weight" for "eating enough." The body can downregulate its metabolism when facing a state of calorie restriction, which leaves people feeling downright lousy, even if their weight is stable.

It's been well-established that people on restricted diets (including GFD and allergy-related elimination diets) can not only be deficient in micronutrients like vitamins and minerals, but also in calories themselves, so it's worth taking stock of your overall diet and checking whether you're getting enough of both micronutrients and macronutrients (and if you're properly absorbing those micronutrients, which is a serious issue for people with things like celiac disease).

Thank you so much for your response! I was never tested for Celiac, nor sent to a dermatologist. They sent me to an allergist, who seemed skeptical that I was itchy from something food based, until they saw my legs. Initially they told me to stop shaving, which wasn't the problem - but you can see the poor quality of health care in my area. 

 

They wanted to send me to a specialist several towns over, but she basically told me that we would be doing allergy shots with bee therapy to help my allergies. I tried to explain that if I ate anything with wheat in it, I got a rash, could it be celiac, etc, and she refused to even entertain the possibility of Celiac as I didn't have the stomach issues. 

 

I will have to track my calories, because that is a possibility. As of now, I mainly survive off of greek yogurt/eggs, chicken, corn tortillas, vegetables, potatoes, and I recently found gluten-free soup that has chickpea noodles. Before I went gluten-free, I was only netting about 1000-1200 calories a day that was food. I am about 5'4" and 130 lbs. 

 

The low blood sugar has been happening more frequently, ever since I recovered from the virus - wasn't sure if this was primarily due to gluten-free or something messed up in my system. I eat about 3 meals a day, but may try to add in some protein based snacks - namely more greek yogurt with some fruit and/or a larabar to try to supplement. 

[newtonfree]

1000-1200 calories is definitely too low for most 130lb adults to feel well on. That's actually the medical definition of a low-calorie diet (<1200 calories), which is something typically prescribed to morbidly obese patients (meaning obese patients with obesity-related health consequences like high blood pressure, type II diabetes, sleep apnea, etc) to facilitate weight loss that is rapid but with minimal side effects (like micronutrient deficiency).

And, if you happen to be an undiagnosed celiac (or have any other condition impairing nutrient absorption), you might not even be absorbing the whole 1000 calories totally effectively.

Allergists are good at recognizing consequences of allergies. DH is not an allergic-type rash, and so I would not expect an allergist to reliably identify it. A dermatologist and good GI are your friends in properly both your rash and the general state of your digestive system.

Take it from a doctor, married to another doctor, who made it to his mid-30s with celiac disease and DH - we can only strive to be experts in our own specialty, not everyone else's!

So the only true medical advice I can give online is to go get medical advice in person with the right kind of specialists. If the allergist didn't recognize the rash as being an allergic-type dermatitis, that's about the only thing they can reliably say about it. Dermatologists are the skin experts. GIs are the digestive system experts. They're the ones who can help you get to the bottom of what may or may not be going on in those systems.

But my "general, non-medical life advice" would be to take a look at your overall nutrition. Count how many grams of protein and fat you're getting, and check them along with your total calorie intake against expert dietary guidelines like the USDA guidelines.

You'll notice that the USDA guidelines for adult women range from 1600-2400 calories per day, depending on your age and overall activity level. Even a sedentary, elderly woman is suggested to target 1600 - as much as 60% higher than you're getting.

My suspicion is that, independent of pursuing the cause of your rash and other symptoms, you might find yourself feeling far more well by meeting the calorie targets in the guidelines, especially if those calories come primarily from a combination of low-GI complex carbs, protein, and healthy fats compared to sugar and refined carbohydrates.

[Scott Adams]

We have hundreds of gluten-free recipes here:

https://www.celiac.com/celiac-disease/gluten-free-recipes/