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Soconfused27 added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)Newly Gluten Free, New SymptomsHi everyone. I had a positive blood test for celiac come back about 2 months ago. I had a endoscopy done the end of June. I just got a copy of the results and I have a follow up appointment next week. The biopsy results are mild intraepithelial lymphocytes, chronic inflammation and mild villous atrophy.
After my blood test came back positive, I was told to trial a gluten free diet immediately after the endoscopy. I eliminated all gluten from my house and after a few mishaps in the beginning, I believe I have been gluten free for 2 weeks now. I know not to expect to feel better immediately but what I didn't expect was to get an entire list of new symptoms. Since my appointment isn't until next week, I wanted to see if anyone else experienced this.
I did not have any gut issues until after I went gluten free. Since eliminating gluten I am super bloated everyday, my belly gurgles all the time, and I have a burning feeling in my stomach. I also get extremely dizzy when I am trying to do my gardening, (ie sitting down weeding and standing up). My gums are getting worse, my fatigue has increased and numerous others.
This on top of my other symptoms is driving me insane. Has anyone else experienced new and worsening symptoms? If so how long until they started to calm down?
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Soconfused27 added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsGastroscopyI went to the doctor yesterday and was told that I would need a gastroscopy to confirm celiac. She said since my antibodies were a weak positive I should eat as much gluten as I can before. As soon as the gastroscopy is over I should start a strict gluten free diet and a low GI diet.
I had a choice between 2 doctors and I made my choice base on my lack of trust in the one doctor.
I found out last night my choice doctor is taking the entire summer off! I have to call the office on Monday and see if I can get in before he leaves, if not I have to wait until September. I could of course call my doctor and ask for the referral to be switched to this other doctor.
My question is would you wait an entire summer for a doctor (that you never met) to do a simple procedure or would you just go with the other doctor. I had him as my doctor when I was pregnant with my daughter and he's not bad I just don't think he was that thorough. Does the doctor do a report? Or is the "footage" sent to a pathologist.
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Soconfused27 added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsHow Hard Is It To Get A Firm Diagnosis?I read so many posts about normally or mostly normal endoscopic results. Do doctors ever diagnose solely off of bloodwork? I know this sounds stupid but I feel like if it is celiacd then I'm going to need a firm diagnosis.
Without an actual diagnosis I doubt I will be able to get anyone to take me seriously, especially when I read about the extent of cross contamination. I told my husband about my blood results and how the positive IgA could possibly mean celiac. His response was you don't have silly yak. He's supportive of me and I love him but after 7 years of no diagnosis he refuses to believe something might actually be wrong. That and the fact that I down play how I feel most of the time.
More then anything I think I would need a diagnosis for my own peace of mind. I have been "fired" by 2 doctors this year and the last one actually yelled me and that took away the remainder of my fight. If this big flare up didn't start then I don't think I would have kept looking.
Another questions.. Can symptoms of celiac come and go? I think this big flare up of whatever this is is coming to an end. I am greatful for that but you would think if it was all caused by celiac it would be consistant. Despite eating cracker chips (with wheat, barley and rye) last night and a bagel for breakfast this am I feel pretty decent today. Some minor brain fog, sore gums, minor aches, but I was able to get up at 6:30 am and stay up today. Did you have worst days with no rhyme or reason before diagnosis?
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Soconfused27 added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsYears Of SearchingPlease bare with me, this is going to be a long post. I am here in search of opinions. I have been unwell for at least 6 years, maybe most of life but most noticeable the last 6 years. Over these years I have had an increase in symptoms and after numerous doctors visits I was told its all anxiety.
My symptoms include weight loss, hair loss (head and eyebrows), memory loss, cognitive disfunction, anxiety, I get this feeling of having a cloudy head, can't think, going to pass out feelings sometimes after eating sometimes not, joint pain and stiff joints, swollen fingers and puffy face in the morning, dark circles under my eyes, bloodshot eyes, tiered, headaches, swollen glands in my throat, severely inflammed gums and sore mouth. My sympoms seem to come and go but I never really feel 100%.
At my wits end last week in serious pain again I went to the doctor with a list of tests. I actually found a caring doctor who decided to take me on. One of the tests was anti-transglutaminase IgA. I have never heard of this one before and since it was high I decided to google it which led me here.
It says on the form 8.6 with a range of <7.0 so its a weak positive. Other then that I have a positive ANA but that's it everything else looks good. I see the doctor on Friday and assume more tests will be ordered.
My question is does such a weak positive mean anything? Can IgA be indicative of anything else? Can celiac cause all these symptoms that come and go?
Thanks in advance
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