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
Thanks for the reply; sorry for the extremely tardy response. I found an integrative medicine doctor in collingswood that I'm scheduled to see in approximately a month; currently on Armour, but likely need to increase the dosage; also have read that while meds may help manage hashimotos, it's best to deal with the underlying immune response...which can be quite complicated -- diet, adrenals, blood sugar, etc.
Did anything come of your blood work and appointment with Dr. Phillips?
Thanks all for the feedback. I wish this wasn't all so confusing. Frankly, I felt a 1000% better before being diagnosed. It's as if switching to a gluten free diet started a downward cascade of autoimmune-associated conditions. My plan is to have a second food allergy panel and this time, follow it. I loosely followed the original results because my highly regarded GI doc totally dismissed the food allergy panel. However, at this point, I am not dismissing anything. I would also like to more aggressively pursue other possible endocrine-related conditions: diabetes and adrenal function (addisons, etc). I mention these two areas because:
A: I have had extreme brain fog, feeling both extremely fatigued and wired at the same time, waking-up feeling exhausted (no matter how much sleep I get), extreme thirst, excessive urination, etc,
B: I have had elevated blood glucose levels for a while (100 - 108) and an elevated ACTH (70.3); plenty of other labs outside the range, in the bottom quartile or upper quartile too.
The symptoms are very disturbing and have made it impossible for me to work a full-time job. It's been a long slide since 2010. I need to figure out what the heck is going on and do so quickly! Maybe consulting an alternative/integrative medicine doctor will help?
So, It's been 3-years since I was diagnosed and unfortunately, It's been all downhill since. Symptoms seem to be multiplying, not abating. Most recently, I was diagnosed with the early stages of hashimotos and prescribed a low dose of tirosint, which has made me feel very spacey, non-functional. I'm wondering if the extreme fog is any indication of pre-diabetes (have had slightly raised blood glucose level, in the 100 - 110 range for sometime) or adrenal (raised ACTH) function? Anyhow, instead of trying to dig a little deeper, my endocrinologist recommended that I see my primary care physician. WTF? Is it so difficult for practitioners to pull-up their sleeves? While I have heard very good things about my endocrinologist, I'm disturbed that he is so willing to punt. This is is all new to me frankly, as up to 3-years ago, I rarely saw a doctor...which is maybe why I'm in this bind in the first place.
Anyhow, I have been to numerous specialist, none of whom have been able to provide a top down understanding of what the heck is going on here. They all (maybe understandably) operate within their own little tranche. So, I'm thinking of seeing an integrative/alternative/naturopathic doctor(s)...hoping that they can diagnose and treat what the other practitioners have not.
Interesting. So, you are taking an iron supplement. I guess it doesn't upset your stomach? I can't decide which sucks more, the fatigue, the stomach aches, the brain fog or...I'll just go with D: All of the Above!
I appreciate the encouragement. I wish I didn't have to continually educate myself; love the stories about folks who go on a gluten-free diet and voila...instant health!! As for me, the gluten-free diet immediately produced some rather nasty withdrawal symptoms...which I guess was a precursor to the rest of the health issues that followed. Also, I found some of the lab results you had inquired about.
Iron Saturation: 11 (range 15 - 55)
Iron Serum: 28 (range 40 - 155)
PTH: 12 (15 - 65) This # has been low for a long time
among other results that are periodically outside the recommended range. I know that these #s may mean something or they may not.
Thanks for the response. My thyroid #s were not horrible. My TSH has typically been between the low 2s and mid 4s. I know that's within the American range, but have read that for some, even a slight move can be troublesome. What finally inspired my endocrine to put me on tirosint was the TPO level, which I believe was 100, with the high end of the desired range in the low 30s; don't recall the T3 and T4, but suspect that they too were within the desired range.
The name brand meds above are all listed on the glutenfreedrugs site, but I'm not entirely sure about generic. Regardless, I am going to call the manufacturers and get confirmation straight from the horses mouth. Also, when I took that food allergen panel, I tested positive to corn; not sure how to entirely remove that from my diet, unless, I guess, I get some of the meds compounded. Think I need to go down that road?
Greetings All: I wish this were a feel-good post...
I was diagnosed with classic celiac disease 3-years ago and have felt progressively worse ever since. My symptoms prior to diagnosis were mostly neuro-related. I was reasonably fatigued most days, found it exceptionally difficult to focus on anything that didn't interest me, had anxiety and a somewhat sensitive stomach. I also had silent GERD. In comparison to today, I'd take that symptom profile any day of the week!
Now, most days are marred by bad brain fog, which sometimes blows off in the mid-afternoon or just sticks around all day. This has been exceptionally debilitating. I also am experiencing a level of fatigue unlike anything I ever experienced in the past, a much more sensitive stomach and inconsistent bowl movements. Sadly, these symptoms are consistent with a pre-diagnosis...not post-diagnosis.
I am somewhat at a loss. A recent follow-up endoscopy and colonoscopy provided no answers. The results indicated that my villi are healing and there were no mentioned signs of gastritis, crohns, ibs, gerd, etc. The only anomaly that I am currently managing is a sluggish thyroid, which my endocrinologist described as early onset hashimotos. I am currently taking tirosint, which I have been on for approximately a month. I also begrudgingly take achipex (ppi) for the gerd and Adderall for attention/energy. I would say the meds have provided some relief, but I have a long way to go before I can approximate anything resembling normalcy. I'd rather not be taking any meds, none of which I took prior to the celiac diagnosis.
I have had numerous allergen tests and tested slightly positive to certain airborn allergens and a whole bunch of foods. The food test was conducted by alletess shortly after diagnosis, but my GI doc dismissed the results. I'm wondering, now 3-years later, if I should have the test done again and closely adhere to the recommended foods/rotation, etc. I never knowingly consume gluten, but do occasionally consume other common allergens...soy/egg/lactose/nuts. Since my malaise/pain is constant, it's been very difficult to associate symptoms with specific foods...if that's even the problem.
I'm not sure how long it takes for the full benefits of tirosint to kick-in, but I'd love it if these issues were mostly/all thyroid related. As for vitamin/mineral deficiencies, I take a daily multivitamin, plant-based enzymes with most meals and a near-daily regimen of probiotics. Recent blood tests indicated that I am extremely low in iron and also am not absorbing iron well, but because of my stomach/thyroid issues was discouraged from taking an iron supplement. I suspect that my gut still has a long way to go, is constantly inflamed for some reason and needs a buddy.
Does the above resonate with anyone? Does anyone have any suggestions? I'm all ears.
Yeah, it's definitely disturbing how unaware the medical establishment is of celiac disease...so asking a random practitioner about celiac/cognitive connections is a reach. I was at an event not too long ago hosted by a local GI practice and the presenting GI showed the audience brain images that contained celiac-attributed white matter. He spoke specifically about ataxia and although I asked him if the white matter could be associated with cognitive deficits or other neurological conditions, he didn't really answer my question; not sure if he didn't know or didn't want to scare the audience. I have no doubt that current and future research will produce a full range of cognitive and neurological connections. In fact, I recall reading a while back about celiac cases where plaque and calcium had broken through the blood brain barrier, causing disruptive building, blocking neuronal connections, etc.
Thanks for the feedback, Paul. Yes, at times, it does seem like there are no answers. Strictly following a gluten-free diet doesn't appear to be enough unfortunately. I'd just like to know what to do to stop the stomach stuff NOW. I did go to my primary care today. He's a truly exceptional Dr. -- and has been a great launch pad in the past for alternative treatments. I'm going to have a stool and urine analysis conducted to start and we'll see what if anything that reveals. Fortunately, I think my Dr. is willing to explore potential causes beyond Celiac, which has been wonderful. I'm also meeting with a new dietitian to see if she can help with an elimination diet.
Thanks so much for the reply. I'm encouraged by the outcome, discouraged by the length of time. I really hope to be able to make some progress sooner. Frankly, I'm a bit disappointed that I've allowed myself to go on like this for as long as I have. I had a food allergy panel conducted shortly after diagnosis and inquired with my GI about some of the issues you mentioned. He was dismissive of the food allergy results, of which there were many, and encouraged me to simply stick to the gluten free diet, presuming that many of my issues, including the stomach aches would eventually disappear; not the case. Anyhow, do you have any suggestions where exactly to start and what you did to remedy the stomach pain? I'm fearful to consume much of anything these days.
So, as I'm writing this thread, I'm listening to my stomach churn and attempting to ignore the horrible stomach ache that I've had for the past few days. Unfortunately, even after being diagnosed with Celiac Disease nearly 2-years ago and gluten free (including supplements to the best of my knowledge) ever since, many of the pre-diagnosis symptoms remain...including near daily stomach aches, which are actually much worse since going on the gluten free diet. I also seem to now have occasional peripheral neuropathy and increased joint pain. On the plus side, I definitely have more energy and am so thankful to now live mostly anxiety-free...whereas before diagnosis, my anxiety was off the charts.
Anyhow, although I'm extremely indebted to the GI doc that diagnosed me, neither him, nor any of the GI docs I have seen over the past 2-years have offered-up anything other than follow a gluten free diet. Something's amiss though!! And my recent follow-up endoscopy confirmed my suspicion - el villi have not healed much since diagnosis (boo)! And they were DOA to begin with -- complete villious atrophy. And, in spite of all of this, I'm fine with the gluten free diet. In fact, I even find it quite liberating at times, in the sense that there is no longer a dialogue upstairs about food.
I just wish I felt well and it seems as though the cause of the continued symptoms could be anything -- pernicious anemia, candida, IBS, other auto-immune conditions, etc; curious if others have experienced the same or similar symptoms and what you have done to feel well again?
So, so sorry to hear about your emotional and physical trauma. This community has been a wonderfully supportive and educational resource for me and hopefully for you too. Hey, look, now that you know how to manage your condition, you have a whole life ahead of you to live with gusto!
I feel your collective pain. I'm now 39 and for years have been unable to pin-point why I always felt tired, anxious, and unable to focus. Sadly, it was only recently, with my Celiac diagnosis, that this has all crystallized. Although I'm well educated, I can hardly recall anything from undergrad and graduate school. Celiac has most definitely affected my career aspirations and horizon. And, until recently, I'd look at my peers with envy. How are they able to focus so well? Why have they achieved great successes in their respective professions and I have not? Why do I feel so lazy at times? After work, I had two speeds, either directly to the gym to blow off all of the day's anxieties or directly to bed; no ability to simply decompress...too tired! Of course, this would make me feel like I wasn't being truly productive...but I couldn't...and now thankfully know why. Anything that required sustained attention and/or required me to sit for extended periods of time gave me great anxiety, particularly for things that I had no interest in. I'd take physical pain over anxiety any day of the week.
However, since my diagnosis last June, the above has slowly changed. I'm hopeful that between the diet, which still has its challenges, medication and supplements, I'll get to where I want to be. Hang in there...I can tell you that life does improve. I now have days that I feel really good...which I never truly experienced. You don't know what you don't know. GI Doc says that I likely had Celiac all of or just about all of my life. We just have to try a bit harder than those without Celiac...but also have a greater appreciation for life's joys as well.