Need Urgent Advice - any highly appreciated - severely underweight

[Sam101]

Hi all,

Hope everyone is staying well.

The reason why I made this thread is because as the title says; I need urgent advice and severely underweight. 

This is a follow up to a thread I made nearly 2 years ago, and in that time  gone on and off being on a gluten free diet. I know I have to be gluten free for life, but since I have been working from home, its been tough mentally so I have been slipping alot.

My Current Stats:

Male

Height - 5'5 (165cm)

Weight - 47kg (HUGE Weight loss over 6years). My weight 6 years ago was around 65kg.

The weight loss has been gradual over the years and at the moment I feel very weak and scared I might even lose more weight.  My ribs are showing and I look really skeleton-like.

I haven't been diagnosed as a celiac, but before anyone says it could be something else, 3 years ago I went to the hospital (when my weight already dropped significantly -10kg) and got a colonoscopy, blood tests, MRI scan, Ultrasound and CT Scan done and the results didn't show anything sinister. The only thing I didn't get done was a gastroscopy, (because I have a phobia) and therefore the weight loss was attributed to stress. All the symptoms fit celiac perfectly, everytime I eat gluten containing foods I get diarrhea, skin issues etc, and when I stick to a gluten free diet all of this disappears.

Has anyone on this forum had any similar experiences with severe weight loss?

At the moment I really don't know what to do, any advice is Highly Appreciated.

Thanks Guys!

 

[GodsGal]

45 minutes ago, Sam101 said:

Hi all,

Hope everyone is staying well.

The reason why I made this thread is because as the title says; I need urgent advice and severely underweight. 

This is a follow up to a thread I made nearly 2 years ago, and in that time  gone on and off being on a gluten free diet. I know I have to be gluten free for life, but since I have been working from home, its been tough mentally so I have been slipping alot.

My Current Stats:

Male

Height - 5'5 (165cm)

Weight - 47kg (HUGE Weight loss over 6years). My weight 6 years ago was around 65kg.

The weight loss has been gradual over the years and at the moment I feel very weak and scared I might even lose more weight.  My ribs are showing and I look really skeleton-like.

I haven't been diagnosed as a celiac, but before anyone says it could be something else, 3 years ago I went to the hospital (when my weight already dropped significantly -10kg) and got a colonoscopy, blood tests, MRI scan, Ultrasound and CT Scan done and the results didn't show anything sinister. The only thing I didn't get done was a gastroscopy, (because I have a phobia) and therefore the weight loss was attributed to stress. All the symptoms fit celiac perfectly, everytime I eat gluten containing foods I get diarrhea, skin issues etc, and when I stick to a gluten free diet all of this disappears.

Has anyone on this forum had any similar experiences with severe weight loss?

At the moment I really don't know what to do, any advice is Highly Appreciated.

Thanks Guys!

 

Hi Sam101, 

I am not a medical professional. So please don't take this as medical advice. What you are describing can be pretty typical for celiac disease or non celiac gluten sensitivity. 

Phobias are very real, and I respect that. 

Out of curiosity, have you seen a gastroenterologist? Did the doctors order a full celiac panel? If not, you might want to consider it. You just need to make sure that you are eating two slices of wheat bread per day for about 6 weeks before you get the test. 

I have also seen people suggest genetic testing. That doesn't say whether or not you have active celiac disease. But, it would tell you if you have any of the known celiac genes.

My other thought is that it sounds like you have made the connection that gluten is a factor. Unless there is a major advantage to getting the diagnosis, you might consider just going gluten free.

I do highly recommend talking to your doctor to figure out what is right for you. I hope this helps!

[Sam101]

I mean, what I am trying to ask is,

If I get diagnosed as a celiac in the hospital (via gastroscopy) and since im severely underweight, what will they likely do? just tell me to go on a gluten free diet or is there an alternative to first get my weight back up e.g. supplements and then go on a gluten free diet?

[knitty kitty]

@Sam101,

I experienced dramatic weight loss before my Celiac diagnosis.  I lost sixty pounds in six weeks.  

I was finally diagnosed by a genetic test.  I have two Celiac genes.  I couldn't do the gluten challenge for a blood test because I would get so ill and had malnutrition which affected blood tests for Celiac.

Celiac Disease damages the part of the small intestine where vitamins and minerals usually get absorbed.  There are eight B vitamins that are water soluble and can be lost easily and quickly during diarrhea.  

The B vitamin that is frequently lost first is Thiamine, Vitamin B1.  Thiamine deficiency can occur in as little as nine days.  The sudden drop in weight is a classic symptom of Thiamine deficiency.  Other symptoms include peripheral neuropathy, insomnia, fatigue and irritability.  If thiamine deficiency continues, brain function will be affected, as in Wernicke's Encephalopathy.  

High doses of thiamine (300 - 1000 mg a day) are required to correct insufficiency or deficiency.  

Since deficiency in just one vitamin is rare, and because the eight B vitamins all work together, a B Complex vitamin should also be taken twice a day.  B vitamins are water soluble and nontoxic. Any excess your body can't absorb will be excreted in urine.  

I corrected my thiamine deficiency by supplementing with thiamine hydrochloride (thiamine HCl) and B Complex.  I spread my thiamine doses out every two to three hours.  I also took Allithiamine and Benfotiamine, two fat soluble forms of thiamine that can get into cells easily.  Benfotiamine helps heal the gut and Allithiamine crosses the blood brain barrier easily and healed my Wernicke's Encephalopathy.  Thiamine needs magnesium to work properly, so a magnesium chelate supplement should be taken as well.  

Doctors are not trained about vitamins and easily miss deficiency symptoms.  Blood tests are not accurate for deficiencies.  The best way to make a thiamine deficiency diagnosis is to take a minimum 300 mg a day of thiamine for several days and see if there's an improvement.  The World Health Organization (WHO) diagnoses thiamine deficiency in this manner.

Wheat products are required by law to be enriched with vitamins lost in processing.  When we switch to a gluten free diet, we need to replace those vitamins by supplementing while healing and by eating nutrient dense foods.  

(The B vitamins are mostly found in meat.  Liver is an excellent source of vitamins and minerals.)  

If we're not getting enough B vitamins from our gluten free diet, the body will crave gluten containing foods in order to get those B vitamins the wheat/gluten products are enriched with.  Manufacturers use cheap vitamins that are not bioavailable (the body can't really use them) and the quantity is not enough to correct a deficiency. 

I'd rather supplement with my choice of vitamin supplements than eat gluten again.  

You do need to go on a gluten free diet and replenish your vitamins and minerals.  Then you will regain some weight (muscle and fat).  Eating gluten to gain weight will make you more ill and exacerbate vitamin deficiencies.  

Here's some more information....

https://www.merckmanuals.com/home/disorders-of-nutrition/vitamins/thiamin-deficiency

Hope this helps!  

[Scott Adams]

Welcome to the forum. To get screened for celiac disease they would run a blood panel, and you would need to be eating gluten daily for 6-8 weeks beforehand for the test to be accurate. If it is positive your doctor may want to schedule an endoscopy to take biopsies of your villi to confirm this, and for that you'd need to eat gluten daily for at least 2 weeks. The amount of gluten to eat before these tests is usually 2 slices of wheat bread.

If you're not able to do this, you could try going gluten-free on your own to see if this helps relieve your symptoms:

 

[Sam101]

Hi Guys Thanks for the replies.

My specific question is, if I go to the hospital severely underweight and they do an endoscopy and diagnose me as a celiac, what will they do? I know I would have to maintain a strict gluten free diet for life, but is there anything on their side they can do since I am dangerously thin at the moment?

[Wheatwacked]

In 9th grade I was 5'8" and weighed about 90 pounds. That's BMI of 13.7. Your BMI is 17.3. I am still alive at 71.  You are mildly underweight. 

Losing weight can be scary. The world is mostly obese now and not being obese is abnormal. At 6'2" I went from 185 pounds life time high to 159 pound and then back up to my current 168. At 159 I started worrying "What if it doesn't stop?"

Keep a food journal. Here is a link to mine. http://nutrientlog.doodlesnotes.net/

I set a daily target of 4700 mg of potassium a day (the US 100% DV). 2.2 grams of potassium per calorie will get you there. Don't worry about too many carbs but do avoid processed foods and drinks that have sugar added. High fructose corn syrup is bad. The myth about fat was retracted. Don't eat fat free processed food. Avoid gluten at all costs. You already know your personal results and if it causes villi damage you get malabsorption which can lead to malnutrition which is what I think is your real concern.

My current supplements: 500 or1000 B1 (Thiamine), 840 Phosphotidyl Choline, 1000 vitamin C, 500 Niacin, B complex, 1000 vitamin B5 (Pantothenic Acid), 1000 B12, 200 Selenium and 7.5 grams of Nori, 100 DHEA. The nori and selenium for thyroid function. Start with the B1 and add the others one by one in any order.

The essential vitamins and minerals are the tools our bodies need to process the calories we eat. 100% RDA is just the minimum needed for healthy people. Sick people need more.

Just like classifications of obesity there are levels of underweight although most charts just list <18.5 = underweight. Here is a WHO chart for women but close enough. 

[Sabaarya]

On 2/8/2022 at 6:12 PM, Sam101 said:

Hi all,

Hope everyone is staying well.

The reason why I made this thread is because as the title says; I need urgent advice and severely underweight. 

This is a follow up to a thread I made nearly 2 years ago, and in that time  gone on and off being on a gluten free diet. I know I have to be gluten free for life, but since I have been working from home, its been tough mentally so I have been slipping alot.

My Current Stats:

Male

Height - 5'5 (165cm)

Weight - 47kg (HUGE Weight loss over 6years). My weight 6 years ago was around 65kg.

The weight loss has been gradual over the years and at the moment I feel very weak and scared I might even lose more weight.  My ribs are showing and I look really skeleton-like.

I haven't been diagnosed as a celiac, but before anyone says it could be something else, 3 years ago I went to the hospital (when my weight already dropped significantly -10kg) and got a colonoscopy, blood tests, MRI scan, Ultrasound and CT Scan done and the results didn't show anything sinister. The only thing I didn't get done was a gastroscopy, (because I have a phobia) and therefore the weight loss was attributed to stress. All the symptoms fit celiac perfectly, everytime I eat gluten containing foods I get diarrhea, skin issues etc, and when I stick to a gluten free diet all of this disappears.

Has anyone on this forum had any similar experiences with severe weight loss?

At the moment I really don't know what to do, any advice is Highly Appreciated.

Thanks Guys!

 

Ask for genetic panel first and if you have the genes go for endoscopy. 

[Scott Adams]

18 hours ago, Sam101 said:

Hi Guys Thanks for the replies.

My specific question is, if I go to the hospital severely underweight and they do an endoscopy and diagnose me as a celiac, what will they do? I know I would have to maintain a strict gluten free diet for life, but is there anything on their side they can do since I am dangerously thin at the moment?

I don't think they would do anything more to treat your weight issue if you had a celiac disease diagnosis, with the exception of making sure that your diet is 100% gluten-free, and perhaps steering you towards gluten-free nutritional shakes like Ensure to help you gain your weight back. If your current weight is a medical issue, then it would still be an issue regardless of weather or not you have celiac disease.

I guess what I'm saying is that if you know for sure that gluten is causing your issues, then going gluten-free ASAP would be the best choice for your weight issue and recovery, rather than going through a gluten challenge to get diagnosed.