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What Could It Be?


Alienware

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Alienware Newbie

I am trying to figure out what is going on and will post as much as possible. I am 28 yrs old Male and have been losing weight from 148lbs to 133.15 lbs (size 33 to size 31) within 6 months, 12.5% fat, bmi is 20.3, height is 5'8".  I was 135 lbs in high school and hit 148 after graduating college and now I am back to my high school weight. I get bloated belly like i am 7 months pregnant after eating food and get gassy and pain in the abdomen and grumbling feeling (always had belly after eating like i am pregnant and thought it was weird). I had had dental issues as a kid with fillings and recently had to get a filling crowned / root canal on upper 2nd molar along with 4 fillings filled. When I have to burp it does not feel like it is the stomach that has gas but further down maybe small intestine. I eat pasta, bread, meats like chicken, beef, fish. I love rice, eat muffins or croissants for breakfast. I am exposed to tons and tons of gluten on a daily basis. I have hard time concentrating (brain fog), and recently started sweating at night and going through 1 or 2 shirts. I get tingling in feet and knee caps along with feeling of nerve sensation in face (I am guessing some sort of overall nerve inflammation/damage). I get migraines for no reason and seem to last 2-3 days but happen very often so feels like forever. I have had insomnia for the last 1.5 years and once I sleep and wake up I still feel weak, tiered, lethargic in the morning. 

 

I have always had a huge intolerance to heat and needed lots of AC or fan. I get irritated very quick now and use to be very chill and fun to be around. I feel like I am not receiving benefit to how much food I am eating. My calorie intake says I am burning 2400 calories resting and 700 calories being active. I need 3100 calories to maintain my weight..WTF. I have pain on my knee caps and feel like I have lost muscle along with pain in the middle of the spine (feels like pain in bones from not getting vitamin d or calcium into the system).

 

I have made no dietary changes and recently started increasing diet but still not gaining weight. I am drinking Almond milk to rule out issues with whole milk.   I have spoke to my doctor and initially brought up concerns of thyroid and we tested just the TSH and I personally would have preferred a full panel test to see if any antibodies were present that could lead to Hashimoto. TSH was at .8 which would mean closer to hyper than hypo but still in the range (I Personally think I should be at like 1.1-1.3 range). I have always been a hyper type of kid with lots of energy. The teachers always recommend ADD or ADHD medicine but my parents were totally against medicine and believe in old fashioned spanking.  I have attached all my results and one thing that could hint to celiac disease is my basic blood test. It shows signs of a deficiency (also high red blood count) and my guess is a mix deficiency like iron + b12 or folate. I am making an appt with a GI specialist and if anyone knows any good people to go to in DALLAS FORT WORTH METROPLEX. I would love suggestions. I will want to get basic blood work of my nutrients along with antibody blood work to see what is going on in my system. I do not take any sort of medicine currently (prior it was claritin and tylenol/advil) and do my best to stay away from that. I know something is not right and I should not loose 10% of my weight and not even be trying.

 

I can self refer to any doctor and will have time Sept 23-27 to go see someone and it will cost $25 for consultation with Specialist and $15 with my PCP who is internal medicine

 

 

 


High RDW[Open Original Shared Link | Open Original Shared Link]


Iron Deficiency Anemia: usually presents with high RDW with low MCV

 

Mixed Deficiency (Iron + B12 or folate) anemia: usually presents with high RDW with MCV being high, low or often normal range

 

 
 
Open Original Shared Link
Open Original Shared Link
Open Original Shared Link
Open Original Shared Link
 

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notme Experienced

i would get your vitamin levels checked.  and if you are wanting to have a celiac panel done, you will want to continue eating gluten.  what is your target weight?  are you stressing over anything because that will cause you to lose weight if you already have a high metabolism.

Alienware Newbie

Family thinks it could be stress related but I can't explain the night sweats when I am sleeping. I am trying to reduce things that bug me or give me anxiety. I shrug of minor things and before my ocd would kick in and make me perfect everything. I am trying to let the small things go and get help around the house so I am not constantly running around and burning calories. I don't even know what to tell the doctor. All I know is my GI tract does not feel 100% and it could be food allergy, parasite, bacteria or stress.  I bought some gluten free stuff to try and see if couple days of gluten free makes a difference but I am sure the damage has already been done to my small intestine / villi and couple days won't affect it. Seriously seems like gluten is in everything and would be a biatch to give up. If it cures all my issues like weight loss, night sweats, irritability, bone pain, GI bloating /  discomfort, and loose stools. That will be worth the painful transition to the new diet.

 

edit: My ideal weight would be close to what the BMI information calculates as my ideal weight. I know i feel good in size 33 pants, around 145lbs-150lbs and instead of 12.5% body fat it would be around 20% body fat.

Crazykids5 Newbie

I am sorry you are feeling so terrible. The symptoms you are describing are very real and I do not think for one minute they are stress related. With your TSH being on the very low side of normal I would really push for a full thyroid panel to give a clear picture of how the gland is working.  Hyperactive thryoid can cause a lot of the symptoms you are describing, and Celiac can too.  Thyroid problems are so common with Celiac I would also consider having a full Celiac Panel run. Do not stop eating gluten before the test. It will affect the results.

Alienware Newbie

I am sorry you are feeling so terrible. The symptoms you are describing are very real and I do not think for one minute they are stress related. With your TSH being on the very low side of normal I would really push for a full thyroid panel to give a clear picture of how the gland is working.  Hyperactive thryoid can cause a lot of the symptoms you are describing, and Celiac can too.  Thyroid problems are so common with Celiac I would also consider having a full Celiac Panel run. Do not stop eating gluten before the test. It will affect the results.

 

 

I just had lunched and noticed slight bloating, tingling in my feet and hands along with small migranes. I had none of this and after eating within 20 minutes these symptoms kicked in. I know I got gluten since I picked up breaded chicken, with sauce along with rice and mixed vegetable. I am sure I got some sort of gluten along with soy in my system right now.

 

I am making an appt using the recommended GI specialist and plan to tell them all my symptoms along with take my labs. My GP internal medicine got back results for new blood, urine and stool but I can't get them unless I pick them up in person which will be next week at the earliest.

 

Open Original Shared Link

 

 

Dr. John Secor

8221 Walnut Hill Lane, Dallas, TX

Suite 214, LB 1

214-368-6707

 

Dr. Steven Wilkofsky

5934 Harry Hines Blvd. #700, Dallas, TX 75235

214-879-6900.

 

Dr. Peter Loeb, MD, Internal Medicine

8230 Walnut Hill Lane, Suite 610, Dallas, TX 75231

214-345-7398

 

Dr. Tya-Mae Julien, MD,

Dallas Diagnostic Association

Baylor Medical Pavilion I

4708 Alliance Blvd, Suite 200, Plano, TX 75093

0range Apprentice

Do a full thyroid panel. Your symptoms sound similar to Graves' disease, or hyperthyroidism.

eers03 Explorer

Hey, you described what I went through pretty precisely.  I've always been active and energetic, high metabolism, 140's through high school, 150ish through college, then my weight plummeted.  Bone pain, anxiety, burning sensation around shoulders/legs/face, tingling in fingers, quick to get frustrated.  All of which, are quite contrary to my usual demeanor  and daily life.

 

I was diagnosed almost a year ago.  My caloric intake for quite some time was roughly 3,000 calories per day.  I've gained weight finally and with it, lost a lot of the symptoms.  Still have some.  I'm around 172 now and am able to go on light 2 mile jogs again.  Hang in there.  If you're celiac, the gluten-free diet is a must and it will help.


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Alienware Newbie

Do a full thyroid panel. Your symptoms sound similar to Graves' disease, or hyperthyroidism.

In the start I was sure if was thyroid. I knew I was more on the hyper side of the scale versus hypo. Graves was the only thing I could think. My mother had to go to the hospital after my sister was born since she felt weak , tired and hard to swallow along with her throat hurt. They doctors in Dubai at that time when we were living their in 1989 thought it was tonsils. They did surgery and next day she was very weak and while going to bathroom with nurses assistance collapsed and went into coma. I personally think her thyroid was the culprit and she was hypo. I feel like I received that gene and went hyper.

Hey, you described what I went through pretty precisely. I've always been active and energetic, high metabolism, 140's through high school, 150ish through college, then my weight plummeted. Bone pain, anxiety, burning sensation around shoulders/legs/face, tingling in fingers, quick to get frustrated. All of which, are quite contrary to my usual demeanor and daily life.

I was diagnosed almost a year ago. My caloric intake for quite some time was roughly 3,000 calories per day. I've gained weight finally and with it, lost a lot of the symptoms. Still have some. I'm around 172 now and am able to go on light 2 mile jogs again. Hang in there. If you're celiac, the gluten-free diet is a must and it will help.

I really don't know what to say. your story sounds very similar and I honestly just want to get to the bottom of it. I know this is some sort of auto immune and feel like diet along with stress triggered it. I have ate gluten and all sorts of food for life. I have bad GI health like bloated belly, pain in tummy around stomach. stools that don't looked like like torpedos, grumbling noises for life. Now the weight loss, night sweats, feeling crappy all day and weak, along with brain fog, irritability and nervous system issues have me concerned.

cyclinglady Grand Master

 

I am trying to figure out what is going on and will post as much as possible. I am 28 yrs old Male and have been losing weight from 148lbs to 133.15 lbs (size 33 to size 31) within 6 months, 12.5% fat, bmi is 20.3, height is 5'8".  I was 135 lbs in high school and hit 148 after graduating college and now I am back to my high school weight. I get bloated belly like i am 7 months pregnant after eating food and get gassy and pain in the abdomen and grumbling feeling (always had belly after eating like i am pregnant and thought it was weird). I had had dental issues as a kid with fillings and recently had to get a filling crowned / root canal on upper 2nd molar along with 4 fillings filled. When I have to burp it does not feel like it is the stomach that has gas but further down maybe small intestine. I eat pasta, bread, meats like chicken, beef, fish. I love rice, eat muffins or croissants for breakfast. I am exposed to tons and tons of gluten on a daily basis. I have hard time concentrating (brain fog), and recently started sweating at night and going through 1 or 2 shirts. I get tingling in feet and knee caps along with feeling of nerve sensation in face (I am guessing some sort of overall nerve inflammation/damage). I get migraines for no reason and seem to last 2-3 days but happen very often so feels like forever. I have had insomnia for the last 1.5 years and once I sleep and wake up I still feel weak, tiered, lethargic in the morning. 

 

I have always had a huge intolerance to heat and needed lots of AC or fan. I get irritated very quick now and use to be very chill and fun to be around. I feel like I am not receiving benefit to how much food I am eating. My calorie intake says I am burning 2400 calories resting and 700 calories being active. I need 3100 calories to maintain my weight..WTF. I have pain on my knee caps and feel like I have lost muscle along with pain in the middle of the spine (feels like pain in bones from not getting vitamin d or calcium into the system).

 

I have made no dietary changes and recently started increasing diet but still not gaining weight. I am drinking Almond milk to rule out issues with whole milk.   I have spoke to my doctor and initially brought up concerns of thyroid and we tested just the TSH and I personally would have preferred a full panel test to see if any antibodies were present that could lead to Hashimoto. TSH was at .8 which would mean closer to hyper than hypo but still in the range (I Personally think I should be at like 1.1-1.3 range). I have always been a hyper type of kid with lots of energy. The teachers always recommend ADD or ADHD medicine but my parents were totally against medicine and believe in old fashioned spanking.  I have attached all my results and one thing that could hint to celiac disease is my basic blood test. It shows signs of a deficiency (also high red blood count) and my guess is a mix deficiency like iron + b12 or folate. I am making an appt with a GI specialist and if anyone knows any good people to go to in DALLAS FORT WORTH METROPLEX. I would love suggestions. I will want to get basic blood work of my nutrients along with antibody blood work to see what is going on in my system. I do not take any sort of medicine currently (prior it was claritin and tylenol/advil) and do my best to stay away from that. I know something is not right and I should not loose 10% of my weight and not even be trying.

 

I can self refer to any doctor and will have time Sept 23-27 to go see someone and it will cost $25 for consultation with Specialist and $15 with my PCP who is internal medicine

 

 

 

High RDW[Open Original Shared Link | Open Original Shared Link]

Iron Deficiency Anemia: usually presents with high RDW with low MCV

 

Mixed Deficiency (Iron + B12 or folate) anemia: usually presents with high RDW with MCV being high, low or often normal range

 

 
 
Open Original Shared Link
Open Original Shared Link
Open Original Shared Link
Open Original Shared Link
 

 

FYI -- I"m not a doctor!  Based on your blood work the low figures indicate "tiny little red blood cells" also known as Thalassemia.  It's just a genetic anemia that may or may not cause any symptoms.  It looks like your hemoglobin is okay at 14.5 so you're not anemic based on the Thalassemia.  But, then I see another hemoglobin figure at around 5!  Is that right?  I'm not sure about that measurement.  

 

In any case, look up Thalassemia.  People of Lower Asia, Africa and the Middle East have the highest incidence.  (I guess those Romans got around everywhere is the only explanation for me having it).  The good news is that you probably won't ever get Malaria!  The bad news is if you have a child and both parents carry the Thalassemia gene your child could be born extremely anemic and would require transfusions for the rest of his/her life (in the olden days they perished at birth).  There are four types.  I'm an Alpha and I do have symptoms.  My hemoglobin hovers (all my life) just out of range.  When I get low on iron stores (ferritin), my hemoglobin can drop really low.  Thanks to celiac disease, maintaining decent ferritin levels has been difficult, but I finally got that resolved by taking iron and going gluten free.    

 

So, DO NOT take iron supplements unless instructed by your doctor.  You can have more than one type of anemia.  Taking iron will never fix Thalassemia.  You are stuck with little red blood cells.  Your doctor should run a complete iron panel to see if you are deficient in B-12 or have an iron deficiency.  There's nothing bad about it.  You probably just won't make the Olympics team.  To confirm a Thalassemia diagnosis, you can have a genetic test done.  Might be worth it  if you want to have kids.

 

Have your doctor run a Ferritin test if your hemoglobin drops below range.  

Alienware Newbie

I wanted to update that when I originally went in the doctor thought night sweats could be Tuberculosis but after chest x ray we ruled that out. I am thinking this could be thyroid related or food allergy related. I feel malabsorption caused my weight loss but I can't figure out what caused my malabsorption. My fast metabolism would point to hyperthyroid or has$#&oxicosis. I have a really good ENT I see for my allergy that does thyroid surgery, has ultra sound and can do needle biopsy. I will try to make an appt with endocrine/ent along with GI specialist on my next planned sick day. This weekend I am doing a ct scan of abdomen and pelvis. I seriously would like a blood work of my nutrients, full thyroid blood work along with ultrasound and look at antibodies in my system due to autoimmune like Hashimoto / graves.

cyclinglady Grand Master

Family thinks it could be stress related but I can't explain the night sweats when I am sleeping. I am trying to reduce things that bug me or give me anxiety. I shrug of minor things and before my ocd would kick in and make me perfect everything. I am trying to let the small things go and get help around the house so I am not constantly running around and burning calories. I don't even know what to tell the doctor. All I know is my GI tract does not feel 100% and it could be food allergy, parasite, bacteria or stress.  I bought some gluten free stuff to try and see if couple days of gluten free makes a difference but I am sure the damage has already been done to my small intestine / villi and couple days won't affect it. Seriously seems like gluten is in everything and would be a biatch to give up. If it cures all my issues like weight loss, night sweats, irritability, bone pain, GI bloating /  discomfort, and loose stools. That will be worth the painful transition to the new diet.

 

edit: My ideal weight would be close to what the BMI information calculates as my ideal weight. I know i feel good in size 33 pants, around 145lbs-150lbs and instead of 12.5% body fat it would be around 20% body fat

Gee, your body fat analysis shows that you're in shape.  Why would you want to add more fat?  Plus, your BMI (according to US Government chart) is normal.  Where did you get that analysis done?  How was the fat calculated?  Calipers?  Submerged in a tank?  Or one of those things they put up against your arm at a health fair?    Do a little more research on body fat percentages and BMI recommendations.  That might ease your mind a bit.  

 

Maybe you should just focus on your gut problems for now (one thing at a time).    Don't worry about your weight unless you go below a BMI of 18.5.  Keep a food journal.  what does your allergist tell you?  Have you done testing?

 

I've been both hyper and hypo over the last two years.  My weight never ever changed.  When I was hyper thyroid (not hyper) , I had eye pain (Graves) and muscle weakness, was irritable,  and felt hot all the time.  I did not have more energy.  When I was hypo, I was fatigued and needed to nap in the afternoon, lost hair and my eyebrows thinned.  I'd choose being hypo any day!  Thankfully, my thyroid problems have leveled out and I'm finally normal (with the help of thyroid replacement).  

 

Keep eating gluten if you plan on getting tested for celiac disease.  

 

Good luck!  

Alienware Newbie

Gee, your body fat analysis shows that you're in shape.  Why would you want to add more fat?  Plus, your BMI (according to US Government chart) is normal.  Where did you get that analysis done?  How was the fat calculated?  Calipers?  Submerged in a tank?  Or one of those things they put up against your arm at a health fair?    Do a little more research on body fat percentages and BMI recommendations.  That might ease your mind a bit.  

 

Maybe you should just focus on your gut problems for now (one thing at a time).    Don't worry about your weight unless you go below a BMI of 18.5.  Keep a food journal.  what does your allergist tell you?  Have you done testing?

 

I've been both hyper and hypo over the last two years.  My weight never ever changed.  When I was hyper thyroid (not hyper) , I had eye pain (Graves) and muscle weakness, was irritable,  and felt hot all the time.  I did not have more energy.  When I was hypo, I was fatigued and needed to nap in the afternoon, lost hair and my eyebrows thinned.  I'd choose being hypo any day!  Thankfully, my thyroid problems have leveled out and I'm finally normal (with the help of thyroid replacement).  

 

Keep eating gluten if you plan on getting tested for celiac disease.  

 

Good luck!

Thank you I just made an appt with Dr John Secor who is highly recommend on dfw celiac and is a guest speaker at meeting and events too. I hope he can figure out my gut lol. I just ate bunch if wheat flour bread called roti. I become very bloated and like 7 months pregnant, migraine on the right and left . Tingling nerve sensation in finger and feet. All I can do is live my life and eat my regular diet until my appt on sept 24th.

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  • 3 weeks later...
Alienware Newbie

Dr. Secor was awesome and ran a bunch of test to figure out what was going on. We tested for celiac and it came back negative but I have food allergies to Wheat, Soy, Peanut, Walnut, Shrimp, Corn and Sesame. He does not recommend endoscopy or colonoscopy at this time and recommends a change in diet to see if the mucosa damage will reverse. He was able to find out my red blood count is high due to beta thalassemia and not iron deficiency. I will make lifestyle changes and read up more on beta thalassemia minor to get some better management tips. I am still worried about my 8%-9% weight loss, distended belly, nausea, and night sweats.

kareng Grand Master

Dr. Secor was awesome and ran a bunch of test to figure out what was going on. We tested for celiac and it came back negative but I have food allergies to Wheat, Soy, Peanut, Walnut, Shrimp, Corn and Sesame. He does not recommend endoscopy or colonoscopy at this time and recommends a change in diet to see if the mucosa damage will reverse. He was able to find out my red blood count is high due to beta thalassemia and not iron deficiency. I will make lifestyle changes and read up more on beta thalassemia minor to get some better management tips. I am still worried about my 8%-9% weight loss, distended belly, nausea, and night sweats.

 

 

How does he know their is small intestine damage if he won't look for it? Especially because the Celiac bloods were negative.

Alienware Newbie

He believes the food allergy probably damaged the mucosa which is causing food malabsorption. I will post up full results once I get them from the doctor and speak to the doctor/nurse over the phone. I received a voice mail to update me of the labs. He wants me to try changes in my diet and see if that helps with increasing weight and if that still does not than he would like to try endoscopy. I was surprised during the initial consultation he wanted to do endoscopy since it is gold standard of testing. Now he wants to try dietary changes and see if that will heal mucosa versus spending $$$ right away. 

kareng Grand Master

Just a few things to look into

 

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