This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.
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What are the major symptoms of celiac disease?
Celiac Disease Symptoms
What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic)
Celiac Disease Screening
Interpretation of Celiac Disease Blood Test Results
Can I be tested even though I am eating gluten free?
How long must gluten be taken for the serological tests to be meaningful?
The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free
Is celiac inherited? Should my children be tested?
Ten Facts About Celiac Disease Genetic Testing
Is there a link between celiac and other autoimmune diseases?
Celiac Disease Research: Associated Diseases and Disorders
Is there a list of gluten foods to avoid?
Unsafe Gluten-Free Food List (Unsafe Ingredients)
Is there a list of gluten free foods?
Safe Gluten-Free Food List (Safe Ingredients)
Gluten-Free Alcoholic Beverages
Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?
Where does gluten hide?
Additional Things to Beware of to Maintain a 100% Gluten-Free Diet
What if my doctor won't listen to me?
An Open Letter to Skeptical Health Care Practitioners
Where can I buy gluten-free stuff?
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Ha, Ha!!!!!! If I wouldn't get in trouble for practicing without a license, I would!
I get it because that is what they did to me for years. I never had acid reflux but had enough other symptoms that all screamed Celiac but no.........they told me that my severe stomach pain might be acid reflux so take this script and go away. They never even tried to figure it out past the 10 minutes allowed for the appointment. I'll never forget one doctor that I pushed back on and told her I was not there for meds but to find out what was actually wrong and she got so mad she left the room and never came back. All they kept doing was trying to shove pills down my throat.
I am guessing that the procedure is the one where they tighten the sphincter muscle at the entrance to your stomach? I know so many people who had that done because it's become so common to push that if the meds aren't working well. Follow the money........
If acid reflux becomes that bad, then you have to start looking at food, period.
Here's a link that discusses Mast Cell Activation Syndrome (histamine intolerance) and recommended tests.
This article explains how POTS is related to MCAS.
"In another clinical situation, Shibao et al. and colleagues studied a small cohort of patients who had evidence of mast cell activation as evidenced by elevated urine levels of N-methylhistamine after flushing episodes and who had orthostatic intolerance (69). Detailed studies revealed a profound hyperadrenergic response to standing characterized by tachycardia and hypertension consistent with postural orthostatic tachycardia syndrome, or POTS. This phenomenon is felt to be due the release of vasoactive mediators such as histamine that act locally on sympathetic nerves; autonomic function was assessed to be normal in these patients. The authors have used methyldopa, an alpha-adrenergic agonist, with some success in these patients along with standard medications to block mast cell mediators. They caution against the use of beta-blockers, which may exacerbate mast cell activation."
Vitamin and mineral deficiencies often occur with Celiac Disease. Celiac Disease causes malabsorption which results in malnutrition. It's important to correct nutritional deficiencies after a Celiac Crisis like you endured with your gluten challenge.
Vitamin D is so important! Vitamin D tells the mast cells to turn off histamine production.
Vitamins C and E and B6 help, too.
The eight B vitamins are water soluble and need to be replenished every day. Not enough B vitamins can make one grouchy (or seemingly an alien). Just watch "Naked and Afraid" on Discovery channel. The contestants who don't get protein (chock full of B vitamins) get grouchy, depressed, and irritable. Some contestants have to be removed because their personality changes to the point they become dangerous. This is a drastic example of vitamin deficiencies that develop over a short period of time, three weeks. Now imagine having a subclinical deficiency over a long period and a slower health disintegration.
I lost my faith in doctors when my deficiency diseases were not recognized and addressed. So, I used my food journal and the low histamine diet guidelines to get my inflammation down and my vitamins and minerals up.
Hope this helps.
First degree relatives of celiacs should be tested every 2 years in the absence of symptoms & immediately if symptoms present since celiac can present at any age.
Celiac affects every cell in the body & inflammation is common. My inflammation began in my lower back and the bend of my leg (on the back side of the knees). It progressed to literally everywhere. You name it, back, neck, arms, legs, ankles, hips, wrists, fingers. Excruciating pain as well as swelling. So excruciating that opiates didn't even phase it. I just had to bear it. I would take ice packs & use them until the area was pure D numb. You're never supposed to leave ice on that long but if I hadn't then I would have shot myself. I can not begin to describe the intensity of the pain. The last year before diagnosis, I was sure that within a year, I would be confined to a wheelchair for the remainder of my life.
Now, 5.5 years gluten free, I can't tell you the last time I took a Tylenol or any other anti inflammatory. In fact, I'm not on any meds at all. Nothing.
Thanks for all that info and the links. It would be such a relief if I could know what is causing the fever, and that maybe it will go away as I stay gluten-free. Both my gastro dr and rheum dr said to still stay gluten-free even though I apparently don't have celiac. They are saying to give it 2-3 months to see how I feel then. My fever has been down to around 99.9 the past two days, instead of over 100 and 101 like it's been since February. That is the most exciting thing so far. My stomach is not as severe or bad, but certainly not great, and I don't feel out of the woods at all concerning that yet. I still hope to feel a lot better as more time goes by without gluten....I hope. I seem to get bloat and also discomfort in my ribs more in the evening, even if I ate the same thing at lunch. I started a food journal. I guess I need to keep being patient. My rheum dr wants to see the journal in October when I see her again. She said she loves detective work. It sounds like we all need to become food and symptom detectives when dealing with this. Now if we could only get an NCIS episode where they investigate how gluten can "murder" our stomachs, and figure out a cure for gluten issues, besides going gluten-free. It actually hasn't been too bad so far, other than foods that you are iffy or unsure about with all sorts of weird ingredients listed in it. The internet and this site here helps a lot with some of that. Luckily there is a whole lot we can still eat, but corn and corn products are an iffy for me too at the moment, and my dr suggested trying to avoid soy, and that xanthan gum, and a few things like that. Only thing that has shown in my bloodwork so far is chronic inflammation that may mean an underlying autoimmune disease. Ya, I've been hearing "it seems like something autoimmune" for the past few decades. It'd kind of be helpful to figure out exactly what. I'm so tired of being tired. I am sure you all can relate to that. You just want to wake up and feel good.
HEB organics does not bother me at all. Their plain one has to be boiled before I can drink it so I tend to use it in moderation in cooking...it also has xantham gum which explained that issue. MALK gives me no issues (Local Only Brand I think). Used to drink something called Mooala but could not find it unsweetened after my UC dia. Almond Breeze is next up but I can only drink about a cup of it before I start getting burping issues, silk bothers me the least but still causes some issues. Silk cashew is alright and I use it all the time with NO issues at all...but I use it in cooking and do not think I have ever used it without boiling it first either in a icecream base or mixing it in a soup, cheese sauce, or adding a bit to eggs for fluff. Hmm there is one other brand of macadamia milk that dose not bother me and Good Karma Flax milk I have NO issues with....been a good 6 months since I had any though.
^ Two that give me the least issues