Newly diagnosed and struggling

[Megrosewalker]

Hi all, I wanted to share my experience with people who could understand and maybe get some insight. Apologies in advance for rambling.

I am 25 and have 2 weeks ago been diagnosed with coeliac through biopsy, which came as a surprise to my Dr who suspected IBS. I have suffered with mild abdominal pain for about 10 years (between the ribs, slightly to the right) accompanied with gas but didn’t think much of it as it didn’t bother me so much.

After experiencing a lot of stress in 2022 my body decided to give up on me. First I lost hair, then weight, then weird bowel movements worried me. I had a lot of anxiety, an overactive bladder (strange I know maybe unrelated) and did not feel right in myself. I thought maybe this is just what stress does to you. Gastroenterologist put me through the works with endoscopy, colonoscopy and MRI. To our surprise my small bowel was severely damaged.
 

I have been gluten free for 2 weeks. I felt better in the first week. This week I am still struggling with GI symptoms and feel fed up. I thought the diagnosis would solve most the problems. I am worried I may be struggling with lactose intolerance too or maybe I’m sensitive to oats (my dietician told me the proteins are similar and can evoke immune response). I don’t want to keep cutting foods out because I’m scared to loose anymore weight.
 

Is this normal? Should I just give the new diet time due to the extent of the damage? I feel like my family and friends don’t understand what I’m going through. 

[trents]

Megrosewalke, welcome to the forum!

I would not say that what you are going through is normal but I would say that it is common, at least at this early stage of the gluten free experience.

Gluten has addictive properties similar to opiates so there can be a withdrawal experience when it is removed from the diet. I know this sounds incredible but I urge you to research "gluten withdrawal" if you are skeptical.

As you have noted, there could also be an additional food intolerance in addition to the one you have for gluten. This is very common in the celiac community and the most usual offenders are dairy, oats, eggs and corn. But it could be almost anything. You might want to keep a food diary for several weeks to see if you can spot a pattern between how you feel and what you ate. Reactions can take 24 hr. so don't assume you will notice anything immediately after eating. If you want to get a jump start, I would go first with eliminating dairy and see if it makes a difference.

Learning to eat truly gluten free as opposed to just eating lower gluten is a real education process. You have to be a dedicated ingredient label reader and become familiar with how gluten is hidden in processed foods. For instance, would you expect soy sauce to have gltuen or Campbell's tomato soup? They do! There is a good chance that your regression in the second week is caused by some unexpected source of gluten or CC (cross contamination). It can all seem so overwhelming at first but within a year or two you will develop a sixth sense of where gluten might be found and all this will be the new norm. Of course, the biggest challenge will be avoiding gluten when you eat out and have little control over how the food is prepared in the kitchen. Friends and family mean well but they usually are pretty ignorant of how to truly exclude gluten in their cooking. And when you eat at a restaurant you don't know if they did stuff like cooking your gluten free food in the same posts and pans that were used for wheat things. Hang in there!

This might be helpful to you:

 

[JD-New to Celiac]

Megrosewalker - We have all been there. The shock of the diagnosis and then the ongoing challenge of what to eat and what not to eat. Upon diagnosis I tossed out all of my bakeware, toaster, and anything that I thought would expose me to a crumb of gluten. I recall being in the grocery store, going aisle by aisle and finding nothing to eat. Even today, after almost three years, I find I have a very limited diet. I have learned not to eat any processed foods. I can't eat meat for some unknown reason so I rely on a protein powder made from peas. Just peas. I follow a lowfod map diet as I have all sorts of problems with digestion even today. I do not eat oats, and removed all dairy from my diet. Almond milk works for me as a substitute. I think the most important thing to note is vitamin deficiencies. In the beginning the doctor did not monitor anything but the antibody levels (it took 2.5 years for them to return to normal after going gluten free), but I did not realize I was anemic, deficient in B-12, magnesium, and several others. Even after being off gluten and doing all the right things I am still unwell. Initially I was not aware that soaps and other toiletry items might also include gluten. Over the counter medications may also contain gluten. I was told by a nutritionist to do the elimination diet as suggested by Trents. It was helpful but it was also notable that I was not taking in enough calories. I have since been able to gain back about twenty pounds. I was horribly thin at the start of this journey, but it took over two years to get to where I am today. Hang in there! Read all you can and be more knowledgeable than the doctors.

[trents]

One thing that needs to be said is that there is tremendous variability in the sensitivity level to gluten within  the celiac community. Most celiacs don't need to throw away their cookware or avoid eating meat. Processed meats often used "meat glue" to mold their products into a certain shape. Meat glue protein is similar to gluten is the reason but it won't necessarily be an issue for every celiac, just as is the case with oats and dairy, etc. Megrosewalker, you will have to discover for yourself the non-gluten foods that may not work for you. But JD-New to Celiac has some good points about vitamin and mineral deficiencies which generally go hand in hand with celiac disease because of damage to the small bowel lining, the area of the bowel where all nutrition is absorbed. Take it one step at a time and start with the basics first.

Edited March 30, 2023 by trents

[Wheatwacked]

10 hours ago, Megrosewalker said:

I feel like my family and friends don’t understand what I’m going through. 

that is very common. Consider that they are addicted to it and can't understand why you are not joining them. Not much different than people offering an alcoholic "just one drink to celebrate with us, it won't hurt." Here is a good book hosted on Celiac.com.

The damage done to your small intestine villi by Celiac Disease causes malabsorption. The longer untreated the more damage and the longer it takes to undo the damage, and the more vitamin and mineral deficient you will be. Each vitamin or mineral deficiency will have a set of symptoms associated. The symptoms you describe hair loss, fatty stools, gas, depression all will resolve with time. It all depends on you eating enough of the essential vitamins and minerals, even if it takes fortifiying in pill form if you can't eat enough.

Most common and I think most important is vitamin D. Depression, anxiety, compromised immune system, bone health. The normal blood plasma level is 80 ng/ml for optimum benefits. The standard used for sufficient >29 ng/ml. Every autoimmune disease has low vitamim D as a common factor and our society tells us to actively avoid sun, our major source and in the temperate zones only during summer. During summer we store it up in the fatty tissue and it has to last us through the winter. Seasonal Affective Disorder - the midwinter blues can be fixed with sufficient vitamin D. My midwinter blues lasted for years until I started taking vitamin D. I have been taking 10,000 IU a day since 2015. I started at 1000 IU and increased 1000 IU every week until on the fourth day at 10,000 a light turned on and my mood jumped MY GOODNESS, IT'S SUNSHINE IN A BOTTLE. If you look it up there are dire warnings against too much vitamin D but very few cases compared to the number of people suffering from not enough. The main restriction goes back to a mistake in baby formula made in the UK in the 1950's when the manufactorer added 1000 times the maximum D and caused an epidemic of infant sickness and deaths. Almost all research since then requires studies to report only greater than or less than 29 ng/ml.  

In the 70's we were advised to cut back on eggs and meat, the major source of Choline. Choline protects from arterial inflammation, gallstones and gallbladder disease and liver diease. Deficiency can also cause brain fog, fatty diahrea and more. Less than 10% of us eat enough. 3 eggs or a 20 ounce steak a day. Or 10 cups of cooked brocolli if you are vegegarian.

Could we be overlooking a potential choline crisis in the United Kingdom?

benefits of vitamin D   

• Bruce W. Hollis, PhD, director of pediatric nutritional sciences at the Medical University of South Carolina, Charleston, has conducted vitamin D research for more than 30 years. Fear of vitamin D overdose should not be an area of concern for physicians because in all his years of experience he has yet to see one, he said.
• A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL (nature’s level) were associated with no adverse effects;
• Data in patients with breast cancer showing a reduction in the incidence of new cancer with postulated 0 point at 80 ng/mL;
• Colon cancer data showing a reduction in the incidence of new cancer (linear) with postulated 0 point at 75 ng/mL;

Possible Role of Vitamin D in Celiac Disease Onset  The new emerging role of vitamin D and its involvement in immune modulation has led it to be considered as a possible key factor involved in celiac disease

Vitamin D and Depression: Where is all the Sunshine?  Effective detection and treatment of inadequate vitamin D levels in persons with depression and other mental disorders may be an easy and cost-effective therapy which could improve patients’ long-term health outcomes as well as their quality of life.

And not last nor least here is a chart of gluten free foods.  Don't try to recreate your gluten diet with facsimile gluten free foods. You first need to heal.

Products allowed/disallowed in the Gluten Contamination Elimination Diet (GCED), targeting the elimination of gluten cross-contamination

 

[trents]

Megrosewalke, what is your living situation? Are you living in a house where everyone else is consuming gluten? College dorm?

[Megrosewalker]

11 hours ago, trents said:

Megrosewalke, welcome to the forum!

I would not say that what you are going through is normal but I would say that it is common, at least at this early stage of the gluten free experience.

Gluten has addictive properties similar to opiates so there can be a withdrawal experience when it is removed from the diet. I know this sounds incredible but I urge you to research "gluten withdrawal" if you are skeptical.

As you have noted, there could also be an additional food intolerance in addition to the one you have for gluten. This is very common in the celiac community and the most usual offenders are dairy, oats, eggs and corn. But it could be almost anything. You might want to keep a food diary for several weeks to see if you can spot a pattern between how you feel and what you ate. Reactions can take 24 hr. so don't assume you will notice anything immediately after eating. If you want to get a jump start, I would go first with eliminating dairy and see if it makes a difference.

Learning to eat truly gluten free as opposed to just eating lower gluten is a real education process. You have to be a dedicated ingredient label reader and become familiar with how gluten is hidden in processed foods. For instance, would you expect soy sauce to have gltuen or Campbell's tomato soup? They do! There is a good chance that your regression in the second week is caused by some unexpected source of gluten or CC (cross contamination). It can all seem so overwhelming at first but within a year or two you will develop a sixth sense of where gluten might be found and all this will be the new norm. Of course, the biggest challenge will be avoiding gluten when you eat out and have little control over how the food is prepared in the kitchen. Friends and family mean well but they usually are pretty ignorant of how to truly exclude gluten in their cooking. And when you eat at a restaurant you don't know if they did stuff like cooking your gluten free food in the same posts and pans that were used for wheat things. Hang in there!

This might be helpful to you:

 

I really appreciate the support thank you. Hoping you are right with the cross contamination angle as opposed to having other intolerances. I am very interested to read about gluten withdrawal.

[Russ H]

12 hours ago, Megrosewalker said:

I have been gluten free for 2 weeks. I felt better in the first week. This week I am still struggling with GI symptoms and feel fed up. I thought the diagnosis would solve most the problems. I am worried I may be struggling with lactose intolerance too or maybe I’m sensitive to oats (my dietician told me the proteins are similar and can evoke immune response). I don’t want to keep cutting foods out because I’m scared to loose anymore weight.

 

Is this normal? Should I just give the new diet time due to the extent of the damage? I feel like my family and friends don’t understand what I’m going through. 

It can take 2 years for the gut to completely heal although most people recover faster than this. I recovered gradually for the first 3 months and then experienced a sudden improvement in my gastrointestinal symptoms. It took a good year for me to fully recover.

It is common for people with coeliac disease to react to milk. This can be caused by gut damage causing lactose intolerance or a direct immune response to milk protein. When the gut is fully healed, this generally goes. I couldn't tolerate any milk but it no longer affects me.

Most people with coeliac disease can tolerate moderate amounts of oats (about 5 - 10 % cannot). I would wait until my gut had healed and antibody count returned to normal before trying to reintroduce them. It is important that gluten-free oats are consumed as oats can be contaminated with gluten, either because they are grown in rotation with wheat or during processing.

[Megrosewalker]

29 minutes ago, trents said:

Megrosewalke, what is your living situation? Are you living in a house where everyone else is consuming gluten? College dorm?

I live by myself so I should be able to manage cross contamination better at home. Maybe I have not been doing so well although I have gotten rid and replaced so many things. 

[Megrosewalker]

1 hour ago, Wheatwacked said:

that is very common. Consider that they are addicted to it and can't understand why you are not joining them. Not much different than people offering an alcoholic "just one drink to celebrate with us, it won't hurt." Here is a good book hosted on Celiac.com.

The damage done to your small intestine villi by Celiac Disease causes malabsorption. The longer untreated the more damage and the longer it takes to undo the damage, and the more vitamin and mineral deficient you will be. Each vitamin or mineral deficiency will have a set of symptoms associated. The symptoms you describe hair loss, fatty stools, gas, depression all will resolve with time. It all depends on you eating enough of the essential vitamins and minerals, even if it takes fortifiying in pill form if you can't eat enough.

Most common and I think most important is vitamin D. Depression, anxiety, compromised immune system, bone health. The normal blood plasma level is 80 ng/ml for optimum benefits. The standard used for sufficient >29 ng/ml. Every autoimmune disease has low vitamim D as a common factor and our society tells us to actively avoid sun, our major source and in the temperate zones only during summer. During summer we store it up in the fatty tissue and it has to last us through the winter. Seasonal Affective Disorder - the midwinter blues can be fixed with sufficient vitamin D. My midwinter blues lasted for years until I started taking vitamin D. I have been taking 10,000 IU a day since 2015. I started at 1000 IU and increased 1000 IU every week until on the fourth day at 10,000 a light turned on and my mood jumped MY GOODNESS, IT'S SUNSHINE IN A BOTTLE. If you look it up there are dire warnings against too much vitamin D but very few cases compared to the number of people suffering from not enough. The main restriction goes back to a mistake in baby formula made in the UK in the 1950's when the manufactorer added 1000 times the maximum D and caused an epidemic of infant sickness and deaths. Almost all research since then requires studies to report only greater than or less than 29 ng/ml.  

In the 70's we were advised to cut back on eggs and meat, the major source of Choline. Choline protects from arterial inflammation, gallstones and gallbladder disease and liver diease. Deficiency can also cause brain fog, fatty diahrea and more. Less than 10% of us eat enough. 3 eggs or a 20 ounce steak a day. Or 10 cups of cooked brocolli if you are vegegarian.

Could we be overlooking a potential choline crisis in the United Kingdom?

benefits of vitamin D   

• Bruce W. Hollis, PhD, director of pediatric nutritional sciences at the Medical University of South Carolina, Charleston, has conducted vitamin D research for more than 30 years. Fear of vitamin D overdose should not be an area of concern for physicians because in all his years of experience he has yet to see one, he said.
• A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL (nature’s level) were associated with no adverse effects;
• Data in patients with breast cancer showing a reduction in the incidence of new cancer with postulated 0 point at 80 ng/mL;
• Colon cancer data showing a reduction in the incidence of new cancer (linear) with postulated 0 point at 75 ng/mL;

Possible Role of Vitamin D in Celiac Disease Onset  The new emerging role of vitamin D and its involvement in immune modulation has led it to be considered as a possible key factor involved in celiac disease

Vitamin D and Depression: Where is all the Sunshine?  Effective detection and treatment of inadequate vitamin D levels in persons with depression and other mental disorders may be an easy and cost-effective therapy which could improve patients’ long-term health outcomes as well as their quality of life.

And not last nor least here is a chart of gluten free foods.  Don't try to recreate your gluten diet with facsimile gluten free foods. You first need to heal.

Products allowed/disallowed in the Gluten Contamination Elimination Diet (GCED), targeting the elimination of gluten cross-contamination

 

Thank you for the informed medical advice and resources. I started supplementing when I noticed the hair loss although I got worried I was overdoing it, especially with how irritated my bladder was getting so I have not been consistent. I know magnesium and iron can also affect bowel movements. A dietician has only recommended calcium and vitamin D, although I’ve not had a full blood panel. I definitely also suffer with winter blues and brain fog.  I eat a healthy and balanced diet so fingers crossed I can soon replace any deficiencies.

[trents]

I think the hardest adjustments are the social ones. It will get better. There will always be some family and friends who are skeptical that there is anything to this gluten intolerance thing. Some just feel it's the latest fad disease. But others will come on board with you and do what they can to accommodate your needs.

[trents]

1 minute ago, Megrosewalker said:

Thank you for the informed medical advice and resources. I started supplementing when I noticed the hair loss although I got worried I was overdoing it, especially with how irritated my bladder was getting so I have not been consistent. I know magnesium and iron can also affect bowel movements. A dietician has only recommended calcium and vitamin D, although I’ve not had a full blood panel. I definitely also suffer with winter blues and brain fog.  I eat a healthy and balanced diet so fingers crossed I can soon replace any deficiencies.

I would add a B-complex to that supplement mix. Make sure your supplements and any meds you take are gluten free. Pills sometimes contain wheat starch as a filler. Costco's Nature Made and Kirkland Signature brands are good sources of gluten free vitamins and supplements. Most of these products are gluten free and if so they will clearly advertise it on the bottle. As your gut heals you will begin to absorb better and feel better but supplements can give you a jump start.

[Megrosewalker]

14 minutes ago, Russ H said:

It can take 2 years for the gut to completely heal although most people recover faster than this. I recovered gradually for the first 3 months and then experienced a sudden improvement in my gastrointestinal symptoms. It took a good year for me to fully recover.

It is common for people with coeliac disease to react to milk. This can be caused by gut damage causing lactose intolerance or a direct immune response to milk protein. When the gut is fully healed, this generally goes. I couldn't tolerate any milk but it no longer affects me.

Most people with coeliac disease can tolerate moderate amounts of oats (about 5 - 10 % cannot). I would wait until my gut had healed and antibody count returned to normal before trying to reintroduce them. It is important that gluten-free oats are consumed as oats can be contaminated with gluten, either because they are grown in rotation with wheat or during processing.

This has been extremely helpful thank you. I don’t know why I assumed the relief would be instant, perhaps because I felt much better at first. I also have no idea how long I have been suffering. Maybe way before symptoms developed. How could you tell you could not tolerate milk, were the GI symptoms the same as what you experience with gluten consumption? Also at what stage did you reintroduce it?

[Russ H]

I had a similar experience to yours where I was ill with non-specific symptoms since childhood but became much worse following a very stressful period. It is an insidious disease and sufferers become so habituated to the malaise that it comes as a shock as to just how ill they were on recovery. It takes time: your gut needs to heal and your antibody levels come down.

I had similar but more severe symptoms to those I get from gluten when I drank milk. Bloating, burping, reflux, fatigue, diarrhoea. Even quite small amounts made me ill. These came on about 24 hours after consuming milk and lasted for about 4 days. I reintroduced it by accident, probably 6 months after being strictly gluten free. I gradually tried increasing amounts - first cheese then yoghurt.