question Near-constant nausea, worse at night and when talking?

[thorn]

Hello. I was diagnosed celiac via bloodtest in November of 2020, and just got my "official diagnosis" today, as the hospital confirmed I have celiac after going through a gastroscopy December of 2020.

I started having symptoms in June 2020, but it took me a few months and a couple of visits to the doctor to figure out why I was feeling so bad. Because of that, I've only been off gluten for about 4 weeks now, after my gastroscopy. My question is, is it normal to feel nauseous and have little to no appetite most of the time? I've already lost a lot of weight without doing anything, and I can't deny I am quite scared. I'm only able to eat very little without feeling really nauseous. I currently am eating nuts, some fruit (both fresh and dried), gluten-free oatmeal and gluten-free crackers, in various small portions throughout the day.

I also get incredibly nauseous if I talk for 45 minutes to an hour, and I'm not sure if this is normal. I miss being able to talk to my friends and my family, but as I am right now I can't without feeling awful.

I hope this post isn't too messy, it's my first time writing here, though I've looked through the forums as best I can for some answers beforehand. Thank you very much for reading.

[trents]

About 10% of people with celiac disease react to oat gluten the way the react to wheat, barely and rye gluten. And I'm talking about "gluten free" oats. All cereal grains have a form of gluten but in common parlance when we talk about having Celiac Disease, gluten intolerance, gluten sensitivity or an allergy to gluten we are referring to the gluten in those particular grains. So my advice to you would be to ditch the gluten-free oatmeal for the time being. Try gluten free corn grits, buckwheat (not really wheat but a member of the rhubarb family of plants) or quinoa. 

Eliminate as many processed food items as you can from your diet. We are finding that many processed foods don't consistently live up to their gluten free billing. Focus on simple, fresh foods: Fresh meat and vegetables, eggs. Use only black pepper and salt for seasoning. Spices can be cross contaminated with gluten in production by factories using the same equipment to process wheat, barely and rye. We are also finding that the 20ppm standard for being able to put "gluten free" on a label is not strict enough for some celiacs who are very sensitive to very small amounts of gluten. When you must use prepared foods, look for the "Certified Gluten Free" label as opposed to just "Gluten Free." Certified gluten free foods are subject to more consistent testing methods and, in some cases, stricter standards.

Avoid eating out like the plague. Many eateries who advertise gluten free offerings do not practice sound techniques in their preparation of the "gluten free" food such that it may be cooked on the same surfaces as wheat containing food or cut and served with the same utensils as wheat containing food.

In the vast majority of cases, people diagnosed with celiac disease and still having issues like you describe only think they are eating gluten free. In reality, because of lack of knowledge or carelessness they are eating a lower gluten diet. Lower is not good enough. You must totally eliminate gluten from your diet. Examine and research everything that goes into your mouth, including medications and supplements.

Because of damage to the gut , many Celiacs have developed intolerances to other common foods such as dairy and soy and allergies to other foods. Nut allergies are very common.

Summary, keep it plain and simple and fresh. And give it time. You have only been working at gluten free eating for a few weeks. It can take up to a year to experience significant gut healing. More if gluten is still sneaking into your diet, even in small amounts. Really work on educating yourself on how and where gluten is found in prepared foods and how it can be disguised by terminology in the food industry.

Edited January 14, 2021 by trents

[thorn]

36 minutes ago, trents said:

About 10% of people with celiac disease react to oat gluten the way the react to wheat, barely and rye gluten. And I'm talking about "gluten free" oats. All cereal grains have a form of gluten but in common parlance when we talk about having Celiac Disease, gluten intolerance, gluten sensitivity or an allergy to gluten we are referring to the gluten in those particular grains. So my advice to you would be to ditch the gluten-free oatmeal for the time being. Try gluten free corn grits, buckwheat (not really wheat but a member of the rhubarb family of plants) or quinoa. 

Eliminate as many processed food items as you can from your diet. We are finding that many processed foods don't consistently live up to their gluten free billing. Focus on simple, fresh foods: Fresh meat and vegetables, eggs. Use only black pepper and salt for seasoning. Spices can be cross contaminated with gluten in production by factories using the same equipment to process wheat, barely and rye. We are also finding that the 20ppm standard for being able to put "gluten free" on a label is not strict enough for some celiacs who are very sensitive to very small amounts of gluten. When you must use prepared foods, look for the "Certified Gluten Free" label as opposed to just "Gluten Free." Certified gluten free foods are subject to more consistent testing methods and, in some cases, stricter standards.

Avoid eating out like the plague. Many eateries who advertise gluten free offerings do not practice sound techniques in their preparation of the "gluten free" food such that it may be cooked on the same surfaces as wheat containing food or cut and served with the same utensils as wheat containing food.

In the vast majority of cases, people diagnosed with celiac disease and still having issues like you describe only think they are eating gluten free. In reality, because of lack of knowledge or carelessness they are eating a lower gluten diet. Lower is not good enough. You must totally eliminate gluten from your diet. Examine and research everything that goes into your mouth, including medications and supplements.

Because of damage to the gut , many Celiacs have developed intolerances to other common foods such as dairy and soy and allergies to other foods. Nut allergies are very common.

Summary, keep it plain and simple and fresh. And give it time. You have only been working at gluten free eating for a few weeks. It can take up to a year to experience significant gut healing. More if gluten is still sneaking into your diet, even in small amounts. Really work on educating yourself on how and where gluten is found in prepared foods and how it can be disguised by terminology in the food industry.

Hey, thank you very much for the reply, I appreciate it. I was only made aware of the issues with gluten free oatmeal today, so I'm planning on replacing it with rather plain rice for breakfast from now on. I'm definitely gonna have a look at my medications too, the only one I know for sure is gluten free at the moment is my iron supplement.

I've also been avoiding eating out since November, since I now know I can't trust these places not to accidentally gluten me. However, I don't think I'll be able to eat veggies/meat/eggs, due to my appetite being so severely lacking. Eating ex: 5-10 crackers, or a couple of handfuls of nuts, is enough to make me full to the point of nausea. I also still can't stomach the smell of food being cooked, as that makes me nauseous too, and in turn it makes me reluctant to cook anything for myself.

Im just scared due to the intense weight loss I've been experiencing, I'm going to get weighed again sometime soon (at my next Drs appointment) but i lost about 20 kg in just a few months, not doing anything to lose the weight beyond eating very little.

I also don't know how relevant this is, but I am not from the US, and as such I am to some degree uncertain of how celiac is treated here in Norway by comparison, especially as far as how much gluten is in "gluten-free" food.

[trents]

You might talk to your physician about prescribing some anti nausea medication, like Reglan, for the time being. I just think you need some help right now getting your tummy settled down.

[trents]

You might consider hard boiled eggs. That should not give off a cooking odor and is packed with nutrition. White rice is not a good nutrition source but will give some calories.

[thorn]

5 minutes ago, trents said:

You might consider hard boiled eggs. That should not give off a cooking odor and is packed with nutrition. White rice is not a good nutrition source but will give some calories.

Yes, I'll try some hard boiled eggs for sure. I'm currently in the process of getting rid of my old frying pans and my boiling pot now, since I can't trust them not to gluten me... I may be looking into taking a trip to IKEA in the near future as well to get new cutlery as well.

[knitty kitty]

thorn,

Losing weight without intending to, loss of appetite and nausea are early symptoms of thiamine deficiency.   You should discuss the possibility of gastrointestinal beriberi with your doctor as soon as possible.

Damaged villi caused by Celiac Disease cannot absorb all the vitamins we need.  Some of us can suffer vitamin deficiencies.  Thiamine deficiency can occur in a very short period of time.  

Checking for nutritional deficiencies is part of proper follow up care for newly diagnosed Celiacs.  

Look into the Autoimmune Paleo Protocol diet to help with healing.

Hope this helps.

[thorn]

3 hours ago, knitty kitty said:

thorn,

Losing weight without intending to, loss of appetite and nausea are early symptoms of thiamine deficiency.   You should discuss the possibility of gastrointestinal beriberi with your doctor as soon as possible.

Damaged villi caused by Celiac Disease cannot absorb all the vitamins we need.  Some of us can suffer vitamin deficiencies.  Thiamine deficiency can occur in a very short period of time.  

Checking for nutritional deficiencies is part of proper follow up care for newly diagnosed Celiacs.  

Look into the Autoimmune Paleo Protocol diet to help with healing.

Hope this helps.

This helps a lot, thank you! I'm supposed to have a chat with my doctor this coming tuesday, and then I'll be sent off to take blood tests after that. As far as I can tell, the blood tests are to check for deficiencies, but I'm not 100% sure?

I already know I have iron deficiency anemia, so the fact that I may have more deficiencies wouldn't surprise me.