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How Sick Were You On Gluten?

amberleigh

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Luisa2552 Apprentice
Luisa2552
Posted

I feel for all of you who have suffered for years without a diagnoses! How frustrating! Why isn't this disease easier to diagnose? For me it's been the last 2 or 3 years that have been a problem, but I never figured it was dietary until recently. Had never heard of Celiac disease. I was constantly fatiged. I figured this was due to a heart problem I developed after my last child was born. I was on blood pressure meds to make my heart have an easier job so I figured that had a lot to do with it. But then the cramping and bloating started and the unmentionable 'leaking' that really got me wondering. I'd have occasional D, but nothing serious. My then I fugured it was food and did an internet search and found wheat to be a huge culpret so I stopped. The leaking stopped and the cramping got better, but I continued to have a pain in my upper left abdo. That got me in and the rest is history. My antigens were positive and I go for endoscopy next week. Can't wait to get off of gluten and feel better.

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Celiaction Rookie
Celiaction
Posted

Hi All,

When people ask me what are the symptoms of Celiac I say, "All of them." And certainly this is borne out by the notations in this string. I have two to add: 1) tounge swelling and mouth soreness (spicy food BURNS!, shot of Rum INCINERATES!) and 2) Eye infections (itching, swelling, white pus stings). Is there a comprehensive list of symptoms somewhere on this site?

babygirl1234 Rookie
babygirl1234
Posted

before i was DX with celiac disease i was very sick losing wight stomach pains, when i was 15 i could fit into kids clothes because i only weight 90lbs, and now when i cheat i feel sick to my stomach , and with pizza i throw that up,

Ed-G Newbie
Ed-G
Posted
before i was DX with celiac disease i was very sick losing wight stomach pains, when i was 15 i could fit into kids clothes because i only weight 90lbs, and now when i cheat i feel sick to my stomach , and with pizza i throw that up,

Ahh, the memories...at that age I was 85 pounds. But I never really had the abdominal pain.

Ed in MD

melrobsings Contributor
melrobsings
Posted

Every time I ate I would be doubled up in pain and spend HOURS in the bathroom. Sometimes I would be in so much pain i would see black spots and would put myself to bed and wake up a few hours later covered in hives, not to mention i would be in a horrid mood and refuse to speak. I bloat like you can't believe and get very spacey and can't focus as well.

Teacher1958 Apprentice
Teacher1958
Posted
One thing that really struck me about a lot of these replies is how many of us thought that D was a normal part of living. I know I bought into it for years with my 'I Be Stupid' diagnosis. I still wish Immodium was a prescription med, maybe if our doctors listened and knew how much OTC meds we really were taking to control our 'normal' D we could get diagnosed a bit sooner. Many doctors I believe think we exagerate symptoms when what many do is the opposite. I did not know until months after diagnosis that waking up at night with D is not IBS, something my regular doctor never said, he just pushed more antidepressants and valium.

I asked for reassurance from more than one doctor, and they told me that the IBS was harmless and would not damage my digestive tract. That makes me so angry. I had pain so bad that I was doubled over and would have D until there was nothing left inside me. I would be so exhausted afterwards and so sore. I can't believe that I had to figure this out myself. I'm having a colonoscopy on Monday and am hoping that everything is okay.

TexasJane Newbie
TexasJane
Posted

I agree. I was angry at first but when I realized I could finally be healed by this diagnosis I was ecstatic. I have had problems since 1964 with all sorts of digestion problems,now end up with B 12 deficiency, Neuropathy. anemia, low platelets, stomach problems,teeth problems, all the usual symptoms but no one found it until I went to get a cancer taken off my face (which was not cancer after all). the Dermatologist saw the lesions on elbows and knees and wanted to do a biopsy. He called me soon and said it was positive for DH and for me to see my doctor. I did and he ordered a biopsy of the small intestine. I just think of all that money and time and pain that has occurred over this many years that could have been avoided. I am glad that they can finally know how to look for this disease. Let us hope that it will become a routine test for all those others who have it and don't know.I might add that at the same time the lesions appeared I got a mouth full of what we thought was yeast infection. I could not eat anything without it burning.The lesions then appeated in my ears, my hair, and it seemed that I itched all over, but it only lasted a few weeks. Now though when I eat gluten I start itching all over again. I'm one of those mothers who always cleaned up the plate of what my kids left. So it is a hard habit to break not to eat a bite of this or that. When I forgot and ate a bite of banana bread I made for guests I was sick all night. I guess when it finally appears it only takes a little to make you sick. Does it cause hot flashes? I have been to several doctors for that and they say do not take the hormone. I am 66 and you'd think I would be over that but I have them all the time and they are bad.

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    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      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
      New (possible) celiac diagnosis

      By Judy M · Posted

      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
      Patiently Waiting to See Results

      By Scott Adams · Posted

      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
      Gluten free beer ?

      By Scott Adams · Posted

      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
      Patiently Waiting to See Results

      By trents · Posted

      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. 
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