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. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
I met with my neurologist for a follow-up and had a very frustrating visit. He went over the notes from the neurosurgeon and, after basically accusing me of lying because he had written information down incorrectly, said that the surgeon didn't think I have trigeminal neuralgia, but rather some for of atypical facial pain or migraine disorder. Which is not what the surgeon told me - like I wrote above, he said it was the atypical presentation of TN. The neurologist also said there wasn't anything else that could be done besides medication, which I've since learned isn't actually true, but since I didn't want to keep trying new meds (I've been through three with a fourth sitting in my bathroom unopened), we agreed I'd just come back in a year for my refill appointment. This doctor came highly recommended, but it's clearly not a good fit. In an odd coincidence, the nurse practitioner at my GI's office actually told me she'd fired this same neurosurgeon because of the way he treated her mother after a stroke.
The nurse called with my lab results today and said everything was normal, although when I asked her to give me more specifics, she said I had some abnormalities in my monocyte and lymphocyte results but "nothing to be concerned about." My celiac panel was negative, which either means I've been doing really well with my diet or was misdiagnosed in the first place. B12 normal, iron and vitamin D on the low side of normal.
At least I know that ongoing celiac damage isn't the cause of my trigeminal neuralgia, which was my initial goal. I feel like I've found some worms under these rocks, though.
Well, I saw the neurosurgeon today and, like my GI, he also said he wasn't aware of any connection between celiac disease and trigeminal neuralgia. He more clearly defined mine as the atypical form, which means it doesn't respond well to medication but is also a bad candidate for surgery. I pulled out the University of Chicago's description of celiac-related neuropathy, which includes one-sided facial/head pain, but he felt that was a totally separate entity. I need to do some serious medical literature digging to find some information that will inform both of these doctors that there is a known relationship between TN and celiac disease, at least in that the rates of each are higher in patients with the other.
But can I trust my initial diagnosis? I didn't have a blood draw at the time - I changed jobs and temporarily lost insurance right after my endoscopy/biopsy. At this last visit, the nurse practitioner said my chart showed eosinophilic esophagitis, and that got her saying there could be other non-celiac causes. She wasn't clear on whether that could mean "in addition to" or "in lieu of" celiac disease and I feel like I need a more definite answer if the biopsy wasn't actually conclusive. I brought up the idea of genetic testing (in part because my son is short-statured) and neither she nor the GI had much knowledge about it.
Ah, I see. I've done a lot of reading over the past ten months, but I guess I didn't put all of that together. I went to the GI last week with the thought that a celiac panel would reveal if I was still ingesting gluten by accident, but now if I get a negative result I'll be all the more questioning of my diagnosis. I'm supposed to go back in a month, so I think I'll plan to gluten-challenge the week before and have them draw the panel again for comparison.
Meanwhile, I see the neurosurgeon tomorrow, so I'll be bringing the U of C neuropathy info to discuss.
Thank you all for the input. The nurse practitioner I saw at my GI's office actually said that my initial endoscopy results showed inflammation (esophagus, stomach, duodenum) that could be caused by any number of issues, including other food intolerances, so I'm even more addled by the potential sources of my pain.
I also asked the NP to clarify if the biopsy results definitely showed celiac, and she said that the results were "most likely consistent" with celiac but could possibly be from an intolerance or allergy. I've never heard that biopsy-diagnosed villi damage could be from a source other than celiac disease and the idea that I could be misdiagnosed is incredibly frustrating. Isn't the immunological destruction of villi the hallmark, and most dangerous element, of celiac disease?
I was diagnosed with celiac disease via biopsy last October. I began a gluten-free diet immediately, but did not notice significant changes in how I felt overall. This past April, after two episodes of sharp, intermittent pain on one side of my head, I was diagnosed with trigeminal neuralgia. No obvious physical causes were found - no tumor or MS on the MRI - so I began taking anti-seizure medication to treat it. Three prescriptions later, we haven't been able to find a drug that works consistently without unacceptable side effects, so my next stop is a consultation with a neurosurgeon.
Before brain surgery, though, I thought I should go back to my GI and make sure I had the celiac issues under control. They ran a whole mess of bloodwork, for celiac and other autoimmune issues (haven't gotten results back yet), but when I mentioned the connection between trigeminal neuralgia and celiac, the GI said he wasn't aware of/hadn't seen any evidence that those two things could be related. This seems to be in conflict with the information I've seen about celiac neuropathy, but I wondered if I was making an incorrect jump from that to TN.
In short, neither my neurologist nor my GI seems to feel that there's a connection between my gut and my head, but I tend to disagree. Who's right, and if it's me, how do I make my case?
Thanks, Peter, I appreciate the welcome and input.
I forgot to mention that at this last check-up my son's weight had dropped down the charts, from about the 15th percentile to the 5th, despite no major diet or appetite changes. So that's another red flag for me.
Hello, all. I'm very new but wanted to jump in with a question that's a little time-sensitive.
My 6-year-old son has been officially diagnosed with "short stature" since he was three years old. Basically, he was of average height and weight until he was about 18 months old and then just stopped growing. I took him to an endocrinologist in 2011 and all of his bloodwork came back normal, including a celiac panel. He's been going back for follow-up appointments since then, and because he was hitting the minimal-required-growth rate of 2.5" a year and clinging to his spot on the percentile chart (2.5th), his doctor was content. And really, so was I, despite the fact that his father and I are of average size (5'11" and 5'5").
Then last October, after more than 20 years of thinking I just had a nervous stomach, I was biopsy-diagnosed with celiac disease. With this information, I'm looking at my son's lack of growth in a new light, and at his annual endocrinologist follow-up, I mentioned this change. They ran the celiac panel and other tests, and the doctor feels everything came back normal, but I'm not as convinced. HIs vitamin was just below normal, which seems odd for a kid who drinks milk all day and has been outside all summer. He was also just below the low end of normal prealbumin. His thyroid function was iffy as well (edge of normal; she wants to retest in 4 months).
So my simplest question is: now what do I do? I'm sure the most logical answer is to put him on a gluten-free diet, but there are a couple complicating factors:
1) His father and I share custody, so his dad would have to be totally on-board and able to maintain the requirements.
2) I live in a house with 8 other people (2 other adults and 5 other kids), so it would be really hard to keep him away from "bad" food.
In light of these, I feel like I really need to know FOR SURE if he has celiac, even though I know not everyone even gets that answer. Is there any intermediate step between here and endoscopy, other than a gluten-free diet?