Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Sick For 3 Years And Now I Know Why....


amethystium-sky

Recommended Posts

amethystium-sky Rookie

hello all im new to this and i just wanted to ask a few questions.

well here is my story thus far….

im 22 years of age, suffering for the debilitating affects of constant nausea/ loss of appetite as well as severe weight loss ( 5 4” from 115lbs to 82lbs, im a pretty small person to start with and i cant afford to lose any more). i loosing weight and had an inability to gain any weight while eating a balanced diet with a (calorie count of 3,000 a day) i have had to struggle with unimaginable vertigo/dizziness on a daily basis for the past 3 years. other minor symptoms such as persistent acne,( i have tried every over the counter and prescription medication available nothing has helped even the slightest ). chronic constipation off and on, fatigue/ weakness and or not feeling rested when i have 12 or more hours of sleep. i have been to 3 different doctors, two for gastrointestinal and two for ear nose and throat problems. have had every blood test, malisorbition (sp?), anima, stool fat, all my organs tested, protein and vitamin deficiencies, ultra sound, as well as ct and mri's, heart related (ekg's) and endoscopes. all tests came back clear with the exception of being diagnosed with IBS.. which is just and excuse because doctors really don’t know whats causing so many people needless pain..

it wasnt until this last month that my symptoms became progressively worse, i had a 10 day ordeal of severe vertigo and nausea. so much so to the point where i was spending all day sleeping on the bathroom floor for fear that i was always going to get sick and couldn’t make it in time. i was admitted to the ER and after 6 hours they discharged me with a 4 page list of tests. all they could come up with was that i was dehydrated and to follow up with my doctor.

recently as of march 20 th i was tested the second time for allergies ( lactose, gluten intolerance/celiac) and finally i got a diagnosis of celiac.

i Have started a gluten-free diet, lots of veggies, fruit, rice and gluten-free food to have snacks to help me gain some weight.. its been about a week and im not feeling any better…not worse.. but about the same as i always do.. realistically how long dose it take to begin feeling better and what could i do to gain some more weight?.. can strange symptoms like dizziness and acne be caused by celiac disease?.. has anyone had these symptoms and did they go away with staying true to a gluten-free food diet?

i also had a elevated glucose & cortisol level i have a doctor appointment tomorrow morning and im really worried what the glucose and cortisol have to do with or if they are the reason im sick as well.. diabetes is in my family but im tested all the time and its always “normal”

any information or ideas are of great help and much appreciated!!

-kerissa


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



TCA Contributor

I have the acne and dizzyness. Remember it can take months to see the difference. It took me a few months. I hope you feel better soon.

nettiebeads Apprentice

There are many variable factors in each case of celiac. You didn't state how long you had had the symptoms. Everybody heals at different rates. I'm glad you're not getting worse at least. You need to not only look out for wheat, oats, rye and barley and malt in foods, you also have to look for the offending glutens in other products - meds and toiletries. Some people have had to have a course of steroids to help start the healing. Another good thing for celiacs is L-glutamine (no, not gluten in it directly) just be sure to get a gluten free bottle of it. Also, cut out diary for awhile, if you haven't already. Some people have had to go back to basics - no prepared anything from the center aisles of the grocery store, just the perimeter - meats veggies and fruits. Hope this helps and keep coming back with any questions - we're a very caring bunch and know how hard and complicating this disease can be on every day life.

Annette

Clark Bent as Stupor-Man Contributor

at this point, I'd recommend reading as much info as possible and consulting with any resource you have (doctor who diagnosed you, friends/family if any are gluten-free, the internet, etc.)... you should get new pots and pans and certain other kitchen items, new toaster, etc.. you should also check your personal products, most importantly those that come into contact with your hands or face... if you take any medications, they might also contain gluten... I'd also recommend stopping as many meds as possible which could also be doing damage internally in an already susceptible system... but you may need certain meds so that's different for each person..

as for not feeling better after a week... I don't think most people feel that much better immediately though some do... for many people it takes months or longer to significantly recover and there are ups and downs on the way... but stick with it 100 % (cheating even once can set you back significantly), and you'll notice improvements at some point..

it's also possible you have other food allergies.. but it's difficult at first to figure them out because you might just be reacting to a food temporarily while you heal internally... you could look into elimination diets or delayed allergy food testing at some point if you feel you are still reacting to certain foods, but I wouldn't go right into one without first consulting with a nutritionist because of how much weight you've lost.. I would also try to find a good nutritionist or dietician by you who can help you with your diet for now..

as for the glucose level being high, I had the same situation recently which also struck me as odd... I was diagnosed hypoglycemic a couple years ago during college and apparently I had impaired glucose tolerance (a pre-diabetic condition) as well from my glucose tolerance test... but I never had a high fasting blood sugar until recently.. it came up at 105 when I had my gluten blood test done... I had my fasting glucose tested again a month later and it was only 88.. I realized that I had eaten more carbs than usual (though still not many for the average person) the day before in order to get gluten back in my system for the blood test (not the best way to approach that in hindsight :rolleyes: )... I'm still looking into blood sugar issues in addition to food allergies myself... an endocrinologist might be able to help you with that although you said you were seeing a doctor about the glucose level..

hope you start feeling better soon...

Charlie

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,902
    • Most Online (within 30 mins)
      7,748

    Patty6133
    Newest Member
    Patty6133
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.