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Could All My Symptoms Be Caused By Celiac?


HelpinOhio

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HelpinOhio Explorer

Ive made several other threads in here, but I wanted everyone to see all my symptoms and what you think of them. At this point I havent had the positive diagnosis yet, but am going to get another test at the end of the month, and Im now 90% sure that I do have Celiac Disease. My mom has it and everything leads right back to Celiac Disease. When I went gluten free for a few days I already started to feel better.

My symptoms:

Physical Symptoms: severe fatigue, malaise, pallor, joint pain and grinding, stiffness, muscle aching and easy cramping, severe temperature sensitivity, skin turns white/purple/blue when cold and red when hot, also numbness, very dry skin and hair, flushed face, sunken eyes, teeth look bad yellow/clear because of loss of enamel, photosensitivity, constant colds and sinus infections, pressure in head, headache, constant ringing in ears, constipation, bloating and gas, reoccuring rash on nose and cheeks, lightheadedness, cant breathe, ocassional palpitations

, probable stunted growth, low weight with skinny bones, weakness, worsening vision and hearing, need to eat and drink constantly or I feel worse...

Mental/Emotional Symptoms: Mild Depression

, moderate anxiety, temporary psychosis, feeling of unreality, like being in a bad dream, everything is passing me by, blunted mood, possible psychic abilities, lack of emotion, lowered inteligence, school grades went from As to Ds, mental fatigue, feeling confused/disoriented, bad memory, no motivation, cant concentrate, mood swings...

From my research, Celiac is the most likely. Next after that is Lupus, but Im pretty sure its not that.

What do you think?


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chasbari Apprentice
Ive made several other threads in here, but I wanted everyone to see all my symptoms and what you think of them. At this point I havent had the positive diagnosis yet, but am going to get another test at the end of the month, and Im now 90% sure that I do have Celiac Disease. My mom has it and everything leads right back to Celiac Disease. When I went gluten free for a few days I already started to feel better.

My symptoms:

Physical Symptoms: severe fatigue, malaise, pallor, joint pain and grinding, stiffness, muscle aching and easy cramping, severe temperature sensitivity, skin turns white/purple/blue when cold and red when hot, also numbness, very dry skin and hair, flushed face, sunken eyes, teeth look bad yellow/clear because of loss of enamel, photosensitivity, constant colds and sinus infections, pressure in head, headache, constant ringing in ears, constipation, bloating and gas, reoccuring rash on nose and cheeks, lightheadedness, cant breathe, ocassional palpitations

, probable stunted growth, low weight with skinny bones, weakness, worsening vision and hearing, need to eat and drink constantly or I feel worse...

Mental/Emotional Symptoms: Mild Depression

, moderate anxiety, temporary psychosis, feeling of unreality, like being in a bad dream, everything is passing me by, blunted mood, possible psychic abilities, lack of emotion, lowered inteligence, school grades went from As to Ds, mental fatigue, feeling confused/disoriented, bad memory, no motivation, cant concentrate, mood swings...

From my research, Celiac is the most likely. Next after that is Lupus, but Im pretty sure its not that.

What do you think?

Your skin reaction to cold sounds like it might be Reynuad's Syndrome which is autoimmune. Same with the joint pain. My RA and other autoimmune diseases were diagnosed 5 years before they finally made the correct diagnosis of celiac. I have had terrible dental health with many root canals and lost my first tooth to being pulled shortly before getting on the road to proper diagnosis. I have several more that I am trying to hang on to. Seeing that there is a genetic history with your mother having it seems to point in this being a logical avenue of investigation. I would warn you that you might want to make sure you have a doctor willing to test for it even if the blood work is negative if you are starting to go gluten free. My blood work was negative but my EGD biopsy was very conclusive. I had been off gluten starting in mid November, had blood work 2 weeks later which was negative and had my scope 6 weeks after being gluten free. Before the diagnosis and dietary intervention I would sit on the couch doing nothing and wondering what was wrong with me. I would walk downstairs to the workshop knowing I needed clean it up and would just about cry because I had no idea how to do what I knew needed to be done. I was desperately faking it through work on many days. Now..no fog!

I hope you find the answers.

CS

eringopaint Newbie

I had undiagnosed celiac for about 30 yrs... and have/had almost all of the same things you have listed here. I was mostly gluten-free for about 5 yrs but didn't get strict until last April. It wasn't until I completely removed all gluten that I started to see real changes.

Are you scheduled to be tested?

Either way you should continue to follow gluten-free diet. It took about 3 months for me to see big changes. And I continue to be amazed at how well I feel. I also had migraines for 30+ yrs and they are gone - unless I eat gluten.

My bone pain and fatigue had gotten so bad early in 08 I was also thinking I had lupus or worse. By the time I had the celiac blood test I was eating so little gluten that I tested negative. Though I did test positive to the celiac gene. Also, I was very deficient in vitamin D from malabsorption.

Let me know how you are doing.

erin

glutenfreegirl Enthusiast
Ive made several other threads in here, but I wanted everyone to see all my symptoms and what you think of them. At this point I havent had the positive diagnosis yet, but am going to get another test at the end of the month, and Im now 90% sure that I do have Celiac Disease. My mom has it and everything leads right back to Celiac Disease. When I went gluten free for a few days I already started to feel better.

My symptoms:

Physical Symptoms: severe fatigue, malaise, pallor, joint pain and grinding, stiffness, muscle aching and easy cramping, severe temperature sensitivity, skin turns white/purple/blue when cold and red when hot, also numbness, very dry skin and hair, flushed face, sunken eyes, teeth look bad yellow/clear because of loss of enamel, photosensitivity, constant colds and sinus infections, pressure in head, headache, constant ringing in ears, constipation, bloating and gas, reoccuring rash on nose and cheeks, lightheadedness, cant breathe, ocassional palpitations

, probable stunted growth, low weight with skinny bones, weakness, worsening vision and hearing, need to eat and drink constantly or I feel worse...

Mental/Emotional Symptoms: Mild Depression

, moderate anxiety, temporary psychosis, feeling of unreality, like being in a bad dream, everything is passing me by, blunted mood, possible psychic abilities, lack of emotion, lowered inteligence, school grades went from As to Ds, mental fatigue, feeling confused/disoriented, bad memory, no motivation, cant concentrate, mood swings...

From my research, Celiac is the most likely. Next after that is Lupus, but Im pretty sure its not that.

What do you think?

Hi there I did not know manyof these where celiac related i too am just trying to figure this all out I was tested a few yrs back and neg but still could not fight the feeling it was wrong as I too have it in my family. so had ND look at my results she picked up the very high IGg on the test and said that should show something so now I am off to entrolab waiting for those results but reading your post has helped I have been reaserching for months and months now to figure this allout thank you for this list I am not crazy....as I was told by one Dr you have anxiety you need pills,,, I sais thank you but I am do not suffer from anxiety something is causing it I could feel it when i eat....and now I know it is not just me...keep us posted on your journey every little bits helps everyone especially us new guys still trying to figure this all out...

Remenyke Rookie

Forgive me for sounding very House-ish, but your symptoms sound a lot like Lupus to me. Have you been check out?

flourgirl Apprentice

Sounds like a good chance you are Celiac to me. I'm also willing to bet you'd be a positive for Reynaud and/or Lupus. The facial rash definitely sounds like Lupus. From what I've been reading, autoimmune disorders often coincide, making diagnosis even more difficult. Get you test for Celiac, and I would suggest an appointment with a good Rhuematologist. Good luck to you.

HelpinOhio Explorer

I cant remember if Ive been tested for Lupus or not. I was tested for several other auto immune diseases like Rheumatoid though, and everything came back negative.

A lot of my symptoms do sound like Lupus, thats why I was considering it. There are reasons why I doubt that I have it though. One, I have no family history of Lupus. and Two, Im a 18 year old boy. Over 9/10 people with Lupus are girls, its mostly a female disease. The facial rash was the one that got me the most worried though. It started 2 summers ago when I had been in the sun and using this face wash. My whole face was very dry and irritated, then the rash appeared. Noone else seemed to notice it, but it was obvious to me. I stopped using the face wash immediately, but the rash didnt go away. I must have had it for 3 months or so. I havent had the rash for since then, but my face is still red.

Being diagnosed with Lupus would be very bad news. Noone wants that diagnosis. Lets just hope its Celiac Disease and not that. Ive heard a lot of people with symptoms as bad or worse than mine, and it was just from Celiac Disease. Im keeping my hopes up.


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sugarsue Enthusiast

Super big hugs to you! Sounds Celiac to me.... I wanted to mention that I had the butterfly rash on my face and they thought lupus but it turned out to be hashimoto's thyroiditis. GOOD LUCK with it all!

eringopaint Newbie

Redness on the face could also be rosaca which is also an autoimmune reaction - and very much connected with celiac. My rosacea was getting slowly but surely worse until I stopped gluten.

erin

sammychaser Newbie

I had many of your symptoms and was diagnosed with gluten intolerance. Just curious ..............Have you been screened for osteoporosis ?

stellar Newbie

I had several of your symptoms before being diagnosed with Celiac in November 08. Fatigue, muscle aches, pain in my cheekbones with lots of sinus drainage, depression, anxiety, headaches, numbness, hot flashes, the usual diarrhea and vomiting, and just a overall "weird" feeling... like I wasn't even in my body at times. The rash on your face however could be Lupus. Anyway you look at it, it sounds like you have an autoimmune disease and need to see a rheumatologist if you haven't already.

Best of luck to you! The sooner you get diagnosed the better you'll feel!

mommida Enthusiast

It sounds like you have done your homework!

Find a great doctor and get tested. For Celiac, Lupus, Lyme Disease, thyroid, and any other auto-immune that could fit the symptoms. These things aren't easy to diagnose. Take your list of symptoms to the doctor. Start a food journal too. It will help you start to read labels and find any food intolerances before starting a gluten free diet. (If you need to.) Don't start the gluten free diet before your testing is done! How much artificial sweeteners and soy are you consuming?

Some good news... a gluten free diet is helpfull for a lot of auto-immune diseases.

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      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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