Celiac but my body still losing muscle or tissue? Why?!

[Katharine W]

Hi, 

My name's Katharine and I've been diagnosed with Celiac after my siblings and parents freaked out about my wrists, ankles, and arms becoming skeletal. They said I looked like a third-world country victim. Or someone that had been starving themselves. I had not. My mom even had me eat several snacks trying to stop it. I only got the blood test for celiac done because I put my foot down with my doctor that something was wrong with me, even if my blood tests came back normal. 

Now, I've been off gluten for a month. I've slipped twice -- neither mom or I thought to check the tomato soup and I got a gluten free bread that probably had cross contamination. However, the muscle or tissue wasting in my limbs has not stopped. My lower arms are getting to be REALLY skinny in a bad way, and I can see more bones in my wrists besides my bony, jutting wrist bones. (I'd make a good skeleton model with my wrists with the little indentations and dips. ) MY ankles are getting just as bad too. 

I need help and advice. I don't know what is causing this. Is it in fact the celiac disease? If so, will it stop or do I have to heal more for it to stop?  

With doctors, who do I see to help? The main doctors here are clueless or brush it aside and my primary doctor from a private practice I trust is trying to help but is limited in her knowledge. 

[GFinDC]

Hi,

It takes time to heal from celiac damage.  Months to years is not uncommon.  That doesn't mean you can't be getting better along the way to complete healing though.  In celiac treatment, the answer is diet, diet and diet.  Getting thorough the first 6 months of the gluten-free diet is probably the hardest for most people.

Some things you should do for several months are:

Eat only whole foods not processed foods.

Eat no dairy.

Eat no oats.

Don't eat at restaurants.

So for example, tomato soup is a processed food.  A plain, whole tomato is not a processed food.

Eat only food you cook yourself from scratch at home.

Get your vitamin and mineral levels checked.

Avoid spicy foods.

Take Pepto Bismol and/or peppermint tea as needed.

Avoid cross contamination with gluten.

Remember when life was simpler.

Actually, while the gluten-free diet can be tough to master, after you get used to it, it's fine.

Avocados and natural style peanut butters are good sources of calories and healthy oils.  I.E not soy or canola.

The immune system response foes not stop when you first stop eating gluten.  It can keep going and cause damage for 6 weeks or more.  That's after every exposure to gluten.  So slip ups are not your friend.

Try doing a google search for "boise idaho celiac doctor".  You might find some local help there.  We are glad to give advice too though   Sometimes there is a local celiac support group with info too.

Edited May 22, 2020 by GFinDC

[RMJ]

Celiac disease, by damaging the intestines, can certainly keep you from absorbing nutrients and calories. It can take time to heal and absorb properly.  

Did you have a biopsy that showed the amount of intestinal damage, or just a blood test?

Aside from gluten, do you have annoying symptoms when eating certain foods?  Some people are intolerant to other foods.  If not, can you eat high calorie foods?

Welcome to the forum.  I’m sure other people will be on here with more advice soon.  

[Katharine W]

1 hour ago, RMJ said:

Celiac disease, by damaging the intestines, can certainly keep you from absorbing nutrients and calories. It can take time to heal and absorb properly.  

Did you have a biopsy that showed the amount of intestinal damage, or just a blood test?

Aside from gluten, do you have annoying symptoms when eating certain foods?  Some people are intolerant to other foods.  If not, can you eat high calorie foods?

Welcome to the forum.  I’m sure other people will be on here with more advice soon.  

My primary care doctor and the dietician she recommended said to eat high calorie foods, so I've been trying to do that. 

I don't have a biopsy yet. The doctor at St. Luke's wanted to wait a couple months before doing a liver blood test. We haven't decided if we're going to have St. Luke's do the test or wait till we move -- we'll be in Oregon before the end of June. I am seeing my primary care doctor in a couple weeks, too. 

Thank you for the welcome. 

[Katharine W]

1 hour ago, GFinDC said:

Hi,

It takes time to heal from celiac damage.  Months to years is not uncommon.  That doesn't mean you can't be getting better along the way to complete healing though.  In celiac treatment, the answer is diet, diet and diet.  Getting thorough the first 6 months of the gluten-free diet is probably the hardest for most people.

Some things you should do for several months are:

Eat only whole foods not processed foods.

Eat no dairy.

Eat no oats.

Don't eat at restaurants.

So for example, tomato soup is a processed food.  A plain, whole tomato is not a processed food.

Eat only food you cook yourself from scratch at home.

Get your vitamin and mineral levels checked.

Avoid spicy foods.

Take Pepto Bismol and/or peppermint tea as needed.

Avoid cross contamination with gluten.

Remember when life was simpler.

Actually, while the gluten-free diet can be tough to master, after you get used to it, it's fine.

Avocados and natural style peanut butters are good sources of calories and healthy oils.  I.E not soy or canola.

The immune system response foes not stop when you first stop eating gluten.  It can keep going and cause damage for 6 weeks or more.  That's after every exposure to gluten.  So slip ups are not your friend.

Try doing a google search for "boise idaho celiac doctor".  You might find some local help there.  We are glad to give advice too though   Sometimes there is a local celiac support group with info too.

I've been told to drink a lot of milk for the calcium since I haven't been lactose intolerant. Milk and cheese has been one of the things that seem to work best when I'm in pain. Is it because a lot of people are lactose intolerant or something else which means I should avoid dairy? 

I was also told that some oats are okay if you're not reacting to them. Was that wrong information?

[Katharine W]

Do you know others who have had this tissue/muscle wasting with celiac? If so, how long did it take for the wasting to stop?  I'm not expecting it to heal quickly. It's the wasting that's scary. It started right before Christmas and now I have very little muscle or tissue on my wrists and it's going up my arms. 

[Ennis-TX]

The enzymes to break down dairy are produced from the tips of the villi in the intestines which get destroyed with celiac disease. The damaged villi also the cause for undernourishment despite eating food, as they are what allow you to absorb the nutrients from your food. Some people get wasting others get inflammation issues and the body constantly storing fat in a semi starved mode.

It can take weeks for the body to stop attacking after a exposure, and 6 months to years to heal. The diet also takes a lot of getting used to, you have to learn to read labels and what is safe for you and what is not. Mistakes will be made we all have made them.

I found adding in easy to digest and certified protein powders helped me stop losing mass years ago, but I only started gaining muscle much later. For now I would suggest eating more simple high protein foods you can stomach easy like, eggs, bone broth, soft cooked meats, etc. Digestive Enzymes might also help you get more nutrients from the food you eat, just see that you get them in the right ratios to what you eat.

[Posterboy]

Katharine W,

It sounds like you have Protein Losing Enteropathy or PLE...

Here is an article or two about it.....Maybe it will help you...

https://www.ncbi.nlm.nih.gov/books/NBK542283/

It is generally diagnosed in Chrons disease but can be found in other GI diseases as well...

Here is  an exhaustive article about it...

"Protein losing enteropathy: comprehensive review of the mechanistic association with clinical and subclinical disease states"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5522668/

I hope this is helpful but it is not medical advise.

Posterboy

[GFinDC]

22 hours ago, Katharine W said:

I've been told to drink a lot of milk for the calcium since I haven't been lactose intolerant. Milk and cheese has been one of the things that seem to work best when I'm in pain. Is it because a lot of people are lactose intolerant or something else which means I should avoid dairy? 

I was also told that some oats are okay if you're not reacting to them. Was that wrong information?

Hi,

You could be reacting to the dairy and oats but not realize it by symptoms.   It can be hard to pick out an offending food when a person is eating multiple foods with many ingredients every day.  That's one reason the whole foods diet is helpful, to find problem foods.

No, you shouldn't eat oats for 6 months per some celiac sources.  Oats are sometimes cross contaminated because they are grown in the same fields as wheat on a rotating basis.

With your situation it makes sense to take every precaution.  That means no dairy or oats or processed foods.

Since you have had 2 gluten slip ups in a short time your immune system is still triggered and doing damage to your gut.  That damage is what keeps us from absorbing nutrients.  You haven't really been gluten-free for a month yet.  You have been gluten-lite.  Celiac is not a condition where we can slip up and not have consequences.  The immune system is not going to ignore cross contamination, but instead will fire up the guns and go into attack mode.  For weeks to months.  It takes very little gluten to trigger the immune reaction.  In your case it probably never stopped yet.

You should know that people with celiac disease often enough will develop additional food intolerances beyond wheat, rye and barley.  The constant irritation of the gut leads to other foods being a source of irritation and sometime the body starts reacting badly to them.  This seems to happen mostly with foods that are eaten often. Some people do a rotation diet to avoid that happening.

Yes, many people with celiac disease lose weight, some gain weight too, although that is rare.  Celiac is a condition where the patient is in charge of their successful recovery.  Each person has to control their own diet and eat only safe foods.  No doctor can do that for us.  It took me 6 months to feel like I had the gluten-free diet down.  Maybe a year to gain a little weight.

It can help if others in your living situation are aware and willing to assist you with living gluten-free.  But there is a lot to learn and some people are not willing to change their habits.

You can take calcium and vitamin D pills, and eat spinach and sardines for calcium.  Avocados are good as they have high protein.  Bacon, red meats, chicken, and fish are good for protein too.

There is a newbie 101 thread somewhere on the forum that may be helpful.

Edited May 23, 2020 by GFinDC

[GFinDC]

On 5/21/2020 at 9:12 PM, Katharine W said:

My primary care doctor and the dietician she recommended said to eat high calorie foods, so I've been trying to do that. 

I don't have a biopsy yet. The doctor at St. Luke's wanted to wait a couple months before doing a liver blood test. We haven't decided if we're going to have St. Luke's do the test or wait till we move -- we'll be in Oregon before the end of June. I am seeing my primary care doctor in a couple weeks, too. 

Thank you for the welcome. 

OK, I didn't see that about the not having the endoscopy yet.  If you go off gluten before the endoscopy your results may not be accurate.  You would need to eat gluten for 2 weeks before the endoscopy so the damage is detectable.  We usually suggest people don't go gluten-free until all testing is complete.  That is because going gluten-free and starting the healing process and then going back on gluten for testing can be very unpleasant.

https://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

What is a gluten challenge?

A gluten challenge is the period of time when gluten is added back into a person’s diet to assist in the diagnosis of celiac disease. Antibodies take time to build into the blood stream before they can be detected through blood analysis. For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge.

• Prior to blood testing we recommend 12 weeks of eating gluten.
• Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten.

In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy. May, 2013

 

[MisterSeth]

On 5/21/2020 at 3:46 PM, Katharine W said:

Hi, 

My name's Katharine and I've been diagnosed with Celiac after my siblings and parents freaked out about my wrists, ankles, and arms becoming skeletal. They said I looked like a third-world country victim. Or someone that had been starving themselves. I had not. My mom even had me eat several snacks trying to stop it. I only got the blood test for celiac done because I put my foot down with my doctor that something was wrong with me, even if my blood tests came back normal. 

Now, I've been off gluten for a month. I've slipped twice -- neither mom or I thought to check the tomato soup and I got a gluten free bread that probably had cross contamination. However, the muscle or tissue wasting in my limbs has not stopped. My lower arms are getting to be REALLY skinny in a bad way, and I can see more bones in my wrists besides my bony, jutting wrist bones. (I'd make a good skeleton model with my wrists with the little indentations and dips. ) MY ankles are getting just as bad too. 

I need help and advice. I don't know what is causing this. Is it in fact the celiac disease? If so, will it stop or do I have to heal more for it to stop?  

With doctors, who do I see to help? The main doctors here are clueless or brush it aside and my primary doctor from a private practice I trust is trying to help but is limited in her knowledge. 

you're not going to like it but those 2 slipups were enough to undo much of the work you were doing. the standard estimate is 3 months before you heal up with some people taking longer and some people (especially small children) recovering in a week. since you're shrinking and that MUST have something to do with caloric metabolism you probably have some B-complex deficiency. I'm a pretty skinny guy myself and my siblings used to make fun of the "granny flaps" on my arms. it took a lot of exercise and high protein intake before they started to go away, but when people on this forum started mentioning B-complex and magnesium my muscles grew faster, and then when people on this forum helped me isolate it to a thiamine (b1) deficiency last week it felt like my IQ doubled overnight

[Aubrey P]

Hi there! I was diagnosed 14 months ago, @ 29 years old. I have been super strict about cross contact, but it took me a full 11 months to start gaining weight back. I even had streaks where I would lose weight and weigh less than I would at diagnosis.

I finally started gaining weight once COVID quarantine hit, and I was home more often, allowing me to cook more often and eat less processed foods (I never ate out at restaurants, I always ended up regretting it if I did. But at first I was living on on processed protein bars and beef jerky).

I also have a corn and soy intolerance. Once I was quarantined and eating less processed foods, I cut back on the corn and soy ingestion also. It really is so hard to not eat processed foods, especially if you live a lifestyle on the go, but it will do amazing things for your body! Hang in there! My first year was terrible TBH, but it's getting easier now that I am healing and having fewer cross contact issues. 

[Katharine W]

Thank you for all your information. This is giving me a better clearer picture of what I am dealing with and what questions to ask the specialist. 

[Posterboy]

KatharineW,

Here is a couple links that might help you.

I came across this recently and explains what might be happening to  you....

Entitled "A Wasting Syndrome and Malnutrition Caused by Small Intestine Fungal Overgrowth: Case Report and Review of the Literature"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6419785/

It might also be SIBO....probably more common of the two overgrowth syndromes....but almost certainly connected conditions...

Here is nice article that explains how SIBO and Celiac disease often occur together...

https://www.celiac.com/celiac-disease/researchers-hunt-causes-of-non-responsive-celiac-disease-r1405/

Where they note quoting

"Patients with a positive culture showed signs of worse mal-absorption. 67% of patients with both non-responsive celiac disease and bacterial overgrowth showed a coexistent disorder."

Taking some Thiamine as Benfotiamine a fat soluble B1 found in the diabetic section 2/day with meals and a Magnesium Citrate with meals might help  your Co-morbid SIBO if it SIBO that is causing your malabsorption and further weight loss!

https://www.eonutrition.co.uk/post/thiamine-deficiency-a-major-cause-of-sibo

I hope this is helpful but it is not medical advise.

Posterboy,