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      Frequently Asked Questions About Celiac Disease   04/24/2018

      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 Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 Gluten-Free recipes: Gluten-Free Recipes
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Jherm21

Help! Still sick

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So where oh where to begin. I read all and everyone's post because as a community I think it's extra special when people have others they can vent to that understand how each other are feeling. Ok enough with the gushy stuff. Down to business. I have been gluten free for almost 9 months October 4 (im counting)  the relief I have felt is diarhea is gone. Another good positive symptom and sign is I'm 5'7 so at diagnosis I withered away to about 108 (very sickly all muscle was gone) I now I got weighed in at 122 today! And I'm literally eating whole foods some extra food maybe some chips here and there but I've always been a chip person. I haven't weighed 122 since I was 18 (Im 29) so that part had me excited. Except for the last few weeks my fatigue has come back with a vengeance. I don't know where it's coming from, i got my thyroid (just tsh until I see endo at end of month when she will check all thyroid hormones) and it was at 3.45 I'm not on thyroid hormone so I wonder if this is causing my fatigue and fast weight gain since I started gaining weight pretty fast (even though I needed it, it happened all at once over a month) I'm also having severe hair loss. I had my iron checked and it's all went up except my ferritin which was at 15 last week's blood test. My symptoms consist mainly of hair loss, shortness of breath, dizziness especially from sitting to standing, really bad raynauds attacks everyday all day (on feet) neck pain (severe) now new symptom started about 4 months ago the back of my shoulder bone to the elbow and clavicle bone are all hurting so so bad. I don't expect anyone to know what's wrong with me I just felt like venting. Also I was prescribed neomycin and xifaxin because a hydrogen breath test showed high methane in my test but normal level hydrogen so the actual SIBO test was negative but she was confused about the high methane and said I may benefit from the antibiotics. I still am waiting to get them from my insurance. I'm a seronegative celiac with positive biopsy. We've already gone through and rules out other scenarios for the villous blunting and IEL's. Any info would help me. I feel so weak some days. And all doctors want to say it's anxiety. I've heard that for far too long I actually went to a hematologist today because I've been freaked out the last year my wbc have been at 3.3 which my lab range is 4.5 and above to whatever the higher limit is. He told me to do a bone marrow biopsy because of the pain in my shoulder and arm and my "low wbc "which he wasn't even concerned about. Is this necessary right now or am I just spooking myself. Is it common to have low wbc. Could it be the extra methane in my breath or whatever. Any help would be great. Listen I have friends and family but they won't listen to all this. They think most of this is in my head. 

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Did they check for candida? And what about your other levels? Keep a eye on your food diary, start rotating foods a bit more, see if you got a new intolerance. They seem to random come and go with me like REALLY random...last month was lettuce which is fine when I brought it back yesterday.  Anyway other thoughts, make sure your getting a bit of everything, I sometimes slip and do not get enough vitamin A, Vitamin K, lycopene, selenium, or zinc when I rotate nuts, seeds, and veggies sometimes reaching a combination that is lacking one mineral or vitamin.   I really do find those "Super Foods" that you need to up a bit for me it is oddly nutritional yeast, kale, cocoa nibs, coconut, pumpkin seeds seem to really boost how I feel.   Sometime a probiotic and enzymes are a huge help.

Might try a low carb (no fruit, grains, sugars, starchy veggies) for a week or two and There is this Candidia FX stuff on sale on Amazon that worked wonders for mine.

There is a app for your phone on google called deficiency finder that is a life saver or use this for a less complete quick reference check to see if your getting everything. Vitamin-Deficiency-Symptoms-Chart.jpg

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Awww Jhern...I'm sorry you are feeling so bad.  (((((Hugs)))))

Please ask your Dr for a full thyroid panel to get a complete picture.  That includes TSH, free T4, free T3, TPOAb and TgAb...the last 2 are antibodies.  With a TSH that high, I would feel terrible...tired and achy for sure.  Most people, including me, feel best with their TSH around 1.  Some labs show an outdated range of .5-4.5.  I would bet that you would benefit from some thyroid medication.

The weight gain could be from healing and absorbing nutrients too.

I hope you get some answers and start feeling better soon!

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Thanks guys! Ill defintley ask about the full thyroid panel. I did antibodies for those thyroid ones a year ago do i have to get that again.  Thanks Ennis for those recommandations I will resort back to my food diary!

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http://hypothyroidmom.com/10-nutrient-deficiencies-every-thyroid-patient-should-have-checked/

Here's an article that explains all the nutrients the thyroid needs to function properly and the consequences to the thyroid if there's a deficiency.  

Some thyroid problems will correct themselves if existing nutritional deficiencies are corrected.  

Check with your doctor to see if any nutritional deficiencies need to be addressed.

Hope this helps.  

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ennis how do you test for Candida overgrowth did I have to see a functional doctor or do medical doctors test. It would seem like a plausible  explanation to my symptoms. 

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They do a breath test, in some cases they can identify it in extreme cases visually if it has spread to the mouth like thrush or viewable on a scope.

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Hi,

I’m sorry you’re not feeling well and sympathize with the lack of answers. It’s not usually normal to have reduced WBC, no. If I had reduced WBC I would want to make sure it’s not a rheumatoid autoimmune condition, so I might get an ANA and a urinalysis.

Are you taking any medications? Do you have a rash? Family history of autoimmunity?

On the other hand, the joint pain - how active are you every day? With me, though I am older, I find that if I don’t use my muscles, I will feel pain eventually. I know we tend to report what we’ve been eating on these boards, but I also think how much we move is important.

I guess I would be most concerned about the WBC and the shortness of breath. The SOB could be anxiety, but the anxiety could be physiologically based. Or it could be something else. Is there a breakdown of your white blood cells by type?

Plumbago

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Yes Plumbago, my Neutrophils are low in particular. I'm not on any medications or have a rash. No one in my family has auto immune problems except my great grandmother who had Rheumatoid arthritis so bad she had to move out west for the better weather. What does the urinalysis show? I had my ANA tested, twice (lol).  I just feel completely sick and fatigue. I cant even explain it to doctors just a general feeling of malaise. Its up and down throughout the day. My blood pressure is extremely low in the middle of the night. I almost pass out going to the bathroom every night it is like clock work. The breathing problem makes me think allergies because I have a deviated septum and have constant nasal congestion and mucus in my throat. I wish I knew exactly what was making me feel so sick. And I am at a loss for the low WBC. It didn't just show up low once but three times this past year and a half. Does anyone know about anything with High methane in the breath?

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Ennis I looked up the nutritional deficiency list you posted. The only ones I was tested for was b1 (three numbers away from being out of range low), b2, b3 there was none detected in my system and I asked my doctor about this and he said its not accurate and never told me what to do about it. Vit E was fine along with magnesium but vit A was very low like one number away from deficiency. These were all checked in March so I am hoping some numbers went up, like my iron panel was severely low when first tested but has gone up to normal numbers except the ferritin. Which my doctor told me don't worry about. The other nutrients I have yet to get tested and hate that doctors only like to test for vit d ( that was insufficient last time and has gone up, from 20 to 43 :) and b12 which was 200 and has gone up to 400 (Ive been getting monthly injections). Which I don't think has done much of anything.

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36 minutes ago, Jherm21 said:

Yes Plumbago, my Neutrophils are low in particular. I'm not on any medications or have a rash. No one in my family has auto immune problems except my great grandmother who had Rheumatoid arthritis so bad she had to move out west for the better weather. What does the urinalysis show? I had my ANA tested, twice (lol).  I just feel completely sick and fatigue. I cant even explain it to doctors just a general feeling of malaise. Its up and down throughout the day. My blood pressure is extremely low in the middle of the night. I almost pass out going to the bathroom every night it is like clock work. The breathing problem makes me think allergies because I have a deviated septum and have constant nasal congestion and mucus in my throat. I wish I knew exactly what was making me feel so sick. And I am at a loss for the low WBC. It didn't just show up low once but three times this past year and a half. Does anyone know about anything with High methane in the breath?

I suggested a urinalysis to see if you had proteinuria, which is something that can happen with certain rheumatoid conditions. But you say you’ve had two ANAs - assuming those came back normal? I really like the suggestion of a food diary and going low carb, especially as raised glucose consumption can lead to a positive methane breath test. You may have a food allergy and/or are producing a lot of mucus in reaction to something, which can make breathing more difficult esp if you have a deviated septum.

I have now jacked my b12 way up and feel better, and I’m also consuming more iron-rich foods. Both of which in general help me feel less run down.

You mentioned having very low BP in the middle of the night - have you measured it? What was it, if so?
I wish I could be of more help.

Plumbago

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4 hours ago, Jherm21 said:

Ennis I looked up the nutritional deficiency list you posted. The only ones I was tested for was b1 (three numbers away from being out of range low), b2, b3 there was none detected in my system and I asked my doctor about this and he said its not accurate and never told me what to do about it. Vit E was fine along with magnesium but vit A was very low like one number away from deficiency. These were all checked in March so I am hoping some numbers went up, like my iron panel was severely low when first tested but has gone up to normal numbers except the ferritin. Which my doctor told me don't worry about. The other nutrients I have yet to get tested and hate that doctors only like to test for vit d ( that was insufficient last time and has gone up, from 20 to 43 :) and b12 which was 200 and has gone up to 400 (Ive been getting monthly injections). Which I don't think has done much of anything.

Did your folate (B9) levels get tested?  Folate deficiency can cause low white blood cells and anemia.  Folate is needed to work with B 12 to make both red and white blood cells. 

Here's a couple of articles.

http://www.nhs.uk/conditions/Anaemia-vitamin-B12-and-folate-deficiency/Pages/Introduction.aspx

https://patient.info/doctor/macrocytosis-and-macrocytic-anaemia

http://www.mayoclinic.org/diseases-conditions/vitamin-deficiency-anemia/home/ovc-20265306

Hope this helps.

 

 

 

 

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Maybe you should consider a bone marrow biopsy.   Your hematologist might be on to something.  At least it would rule out several things.  Based on this link, it could be related to SIBO or another AI issue.  

http://www.medicinenet.com/neutropenia/article.htm

Another possibility is Mast Cell Activation Syndrome or Mastocytosis.  That could explain the WBC, low BP, fatigue, etc.   A bone marrow biopsy is used to diagnose mastocytosis.   

https://www.celiac.com/gluten-free/blogs/entry/1931-mast-cell-activation-syndrome-madness/

https://tmsforacure.org/overview/

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Ennis_TX, can you please post a link to that deficiency chart? I can't read it even when enlarged.  Thanks!

 

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On 9/20/2017 at 9:06 PM, Jherm21 said:

ennis how do you test for Candida overgrowth did I have to see a functional doctor or do medical doctors test. It would seem like a plausible  explanation to my symptoms. 

I had the candida test done via a blood test, testing for antibodies, as it can be in many places in your body and a huge burden to the immune system.

 

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On 9/20/2017 at 5:07 AM, Ennis_TX said:

Did they check for candida? And what about your other levels? Keep a eye on your food diary, start rotating foods a bit more, see if you got a new intolerance. They seem to random come and go with me like REALLY random...last month was lettuce which is fine when I brought it back yesterday.  Anyway other thoughts, make sure your getting a bit of everything, I sometimes slip and do not get enough vitamin A, Vitamin K, lycopene, selenium, or zinc when I rotate nuts, seeds, and veggies sometimes reaching a combination that is lacking one mineral or vitamin.   I really do find those "Super Foods" that you need to up a bit for me it is oddly nutritional yeast, kale, cocoa nibs, coconut, pumpkin seeds seem to really boost how I feel.   Sometime a probiotic and enzymes are a huge help.

Might try a low carb (no fruit, grains, sugars, starchy veggies) for a week or two and There is this Candidia FX stuff on sale on Amazon that worked wonders for mine.

There is a app for your phone on google called deficiency finder that is a life saver or use this for a less complete quick reference check to see if your getting everything. Vitamin-Deficiency-Symptoms-Chart.jpg

Ennis_TX, can you please post a link to that deficiency chart? I can't read it even when enlarged.  Thanks!

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https://www.ahealthblog.com/wp-content/uploads/Vitamin-Deficiency-Symptoms-Chart.jpg
 

 

What are you viewing this on? Looks fine on a computer screen, tablet...not so much. This is not a very comprehensive or detailed list either -_- I really do suggest that app if you have constant issues.

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On 9/20/2017 at 5:53 AM, icelandgirl said:

Awww Jhern...I'm sorry you are feeling so bad.  (((((Hugs)))))

Please ask your Dr for a full thyroid panel to get a complete picture.  That includes TSH, free T4, free T3, TPOAb and TgAb...the last 2 are antibodies.  With a TSH that high, I would feel terrible...tired and achy for sure.  Most people, including me, feel best with their TSH around 1.  Some labs show an outdated range of .5-4.5.  I would bet that you would benefit from some thyroid medication.

The weight gain could be from healing and absorbing nutrients too.

I hope you get some answers and start feeling better soon!

 

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Just now, patc said:

 

I am 70 years, female, and was celiac diagnosed 14 yrs ago. My experience with dizzy episodes (room spins, stops, then spins the other way) was diagnosed as anxiety disorder. I am taking Effexor XR (an anti-depressant that treats anxiety and depression). It has less side effects than any of the others but once on it, it is very very difficult to come off of it...so you may be on it for life. You would need to see a psychologist or psychiatrist (both need referrals from your family dr.) in order to receive a prescription for any anxiety or depressive medicine. Having been on Effexor XR for 25 yrs at a fairly high dose I can say it works, but, would advise anyone to not go that route but instead do cognitive behaviour therapy (cbt) with a psychologist or psychiatrist and exercise a LOT (I walk 5 k per day). This exercise really really helps. Once I eliminated soy in ALL forms from my diet I felt a lot better. I wrote manufacturers of products before buying them, read all labels before buying AND ditched all the creams, shampoo, hair treatment and dyes and creams. The only soap I use for bathing, washing my hands, and shampooing my hair is Dr. Bonner's liquid or bar soap. Buy it on-line or at Choices and Health Stores. The only cream I use for my skin is coconut oil in jar cream form (Nutivina) and any Choices creams that don't have soy, soy lecithin or other weird chemicals. The only chocolate I can eat is SOME Lindt with absolutely NO fillings or flavours; Camino bittersweet chocolate chips from Choices (@ $8.50 for a small pkg!) and only 1 of Hershey's bars--Dark Chocolate. All store bought chips, popcorn, snacks, treats, candy has certain 'oils' that most Celiacs get sick from (Sunflower oil, Soy Oil, especially Canola oil, etc. etc.) The only oils I can safely eat are organic butter WITHOUT colouring ($9 per lb), pure and real Olive Oil (all store brands are filled with canola oil illegally) and pure and real coconut oil in jar cream form that I source from an online Health store. The last time I was fall down dizzy, I couldn't figure it out---then I remembered I had been to an ear specialist the month before---he had obviously used instruments that were not sterilized--he gave me an inner ear infection---the only cure as to wait it out....

Hopefully, my comments are useful to you.  Pat

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Jherm21,

A methane breathe test is usually an indication of SIBO.

I am surprised Feeneyja has not commented on this thread.

see this thread where SIBO is discussed in detail.

https://www.celiac.com/gluten-free/topic/118308-positive-dgp-not-celiac/?tab=comments#comment-976164

Here is the link about the importance of methane test in a SIBO diagnosis.

https://www.ncbi.nlm.nih.gov/pubmed/23470880/

Jherm21 you might also check out this thread that talks about how Iron Deficiency Anemia and H. Pyloria infections can be a sign of low stomach acid.

https://www.celiac.com/gluten-free/topic/119240-diagnosed-with-ttg-iga-level-of-128-three-days-ago-trying-to-conceive-or-should-i-hold-off/?tab=comments#comment-981475

You should also consider taking a good B-Complex like B-50 or B-100 B Vitamins are known to be helpful for Celiacs'.

Here is the research as reviewed on celiac.com

https://www.celiac.com/articles/21763/1/Do-Vitamin-Supplements-Benefit-Celiac-Patients/Page1.html

note this was not a b-complex with all the b-vitamins in them just one's that help with homoeycsteine.

B-Vitamins because they are water soluble should be taken 2/daily or with each meal for best results.

Take some Magnesium Citrate or Magnesium Glycinate the same way for energy to help with your fatigue symptom's.

I think if you start both the B-complex 3/day and the Magnesium Glycinate 3/day you will be surprised how much better you feel in 3 or 4 months.

Also check out this lady's story of how she used High dose Vitamin D to raise her WBC levels.

http://www.funnystrange.net/2010/09/saved-by-the-d-low-white-blood-cells-vitamin-deficiency-and-you.html

I have only scanned it but it came up high in the search results for reasons for low WBC levels and Vitamins but I know Knitty Kitty swears by Vitamin D and I recently was tested low in it so it much more common than doctor's realize. I think knitty kitty says she feels much better when her Vitamin D levels or 80 or above.  (I know you tested for it in your result's) but sometime many of us as celiac's do better with higher ranges than the normal person.

***** this in not medical advice but I hope it is helpful.

posterboy,

 

 

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I've been on a mostly liquid diet for the past two years as that is the only thing that gets my celiac numbers to go down. My only deficiency was WBC (neutrophils). I ate alot of meat for a month and rechecked WBC at the same lab. Normal levels now. So eating alot of meat did it for me. My celiac numbers went up as expected.  Back on the liquid diet.

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    After being scoped at Children's Hospital of Chicago, and my daughters Celiac Disease officially confirmed, I worried about her getting all the nutrients her under nourished body so desperately needed. I already knew she had a peanut allergy from blood tests, but just assumed she would be safe with other nuts. I was so horribly wrong. After feeding her a small bite of a pistachio, which she immediately spit out, nuts would become her enemy. Her anaphylactic reaction came within minutes of taking a bite of that pistachio. She was complaining of horrible stomach cramps when the vomiting set in. She then went limp and starting welting. We called 911.
    Now we never leave home without our Epipens and our gluten free food supplies. We analyze every food label. We are hyper vigilant about cross contamination. We are constantly looking for welts and praying for no stomach pain. We are always prepared and on guard. It's just what we do now. Anything to protect our child, our love...like so many other parents out there have to do every moment of ever day!  
    Then, my second brush with a natural disaster happened, without any notice, leaving us once again scrambling to find a safe place to shelter. It was a warm and muggy summer morning, and my husband was away on a business trip leaving my young daughter and me to enjoy our summer day. Our Severe Weather Alert Radio was going off, again, as I continued getting our daughter ready for gymnastics.  Having gotten used to the (what seemed to be daily) “Severe Thunderstorm warning,” I didn’t pay much attention to it. I continued downstairs with my daughter and our dog, when I caught a glimpse out the window of an incredibly black looking cloud. By the time I got downstairs, I saw the cover to our grill literally shoot straight up into the air. Because we didn’t have a fenced in yard, I quickly ran outside and chased the cover, when subsequently, I saw my neighbor’s lawn furniture blow pass me. I quickly realized I made a big mistake going outside. As I ran back inside, I heard debris hitting the front of our home.  Our dog was the first one to the basement door! As we sat huddled in the dark corner of our basement, I was once again thinking where are we going to go if our house is destroyed. I was not prepared, and I should have been. I should have learned my lesson the first time. Once the storm passed, we quickly realized we were without power and most of our trees were destroyed. We were lucky that our house had minimal damage, but that wasn’t true for most of the area surrounding us.  We were without power for five days. We lost most of our food - our gluten free food.
    That is when I knew we had to be prepared. No more winging it. We couldn’t take a chance like that ever again. We were “lucky” one too many times. We were very fortunate that we did not lose our home to the Los Angeles wildfire, and only had minimal damage from the severe storm which hit our home in Illinois.
      
    In 2017 alone, FEMA (Federal Emergency Management Agency) had 137 natural disasters declared within the United States. According to FEMA, around 50% of the United States population isn’t prepared for a natural disaster. These disasters can happen anywhere, anytime and some without notice. It’s hard enough being a parent, let alone being a parent of a gluten free family member. Now, add a natural disaster on top of that. Are you prepared?
    You can find my Gluten Free Emergency Food Bags and other useful products at www.allergynavigator.com.  

    Jefferson Adams
    Celiac.com 04/23/2018 - A team of researchers recently set out to learn whether celiac disease patients commonly suffer cognitive impairment at the time they are diagnosed, and to compare their cognitive performance with non-celiac subjects with similar chronic symptoms and to a group of healthy control subjects.
    The research team included G Longarini, P Richly, MP Temprano, AF Costa, H Vázquez, ML Moreno, S Niveloni, P López, E Smecuol, R Mazure, A González, E Mauriño, and JC Bai. They are variously associated with the Small Bowel Section, Department of Medicine, Dr. C. Bonorino Udaondo Gastroenterology Hospital; Neurocience Cognitive and Traslational Institute (INECO), Favaloro Fundation, CONICET, Buenos Aires; the Brain Health Center (CESAL), Quilmes, Argentina; the Research Council, MSAL, CABA; and with the Research Institute, School of Medicine, Universidad del Salvador.
    The team enrolled fifty adults with symptoms and indications of celiac disease in a prospective cohort without regard to the final diagnosis.  At baseline, all individuals underwent cognitive functional and psychological evaluation. The team then compared celiac disease patients with subjects without celiac disease, and with healthy controls matched by sex, age, and education.
    Celiac disease patients had similar cognitive performance and anxiety, but no significant differences in depression scores compared with disease controls.
    A total of thirty-three subjects were diagnosed with celiac disease. Compared with the 26 healthy control subjects, the 17 celiac disease subjects, and the 17 disease control subjects, who mostly had irritable bowel syndrome, showed impaired cognitive performance (P=0.02 and P=0.04, respectively), functional impairment (P<0.01), and higher depression (P<0.01). 
    From their data, the team noted that any abnormal cognitive functions they saw in adults with newly diagnosed celiac disease did not seem not to be a result of the disease itself. 
    Their results indicate that cognitive dysfunction in celiac patients could be related to long-term symptoms from chronic disease, in general.
    Source:
    J Clin Gastroenterol. 2018 Mar 1. doi: 10.1097/MCG.0000000000001018.

    Connie Sarros
    Celiac.com 04/21/2018 - Dear Friends and Readers,
    I have been writing articles for Scott Adams since the 2002 Summer Issue of the Scott-Free Press. The Scott-Free Press evolved into the Journal of Gluten Sensitivity. I felt honored when Scott asked me ten years ago to contribute to his quarterly journal and it's been a privilege to write articles for his publication ever since.
    Due to personal health reasons and restrictions, I find that I need to retire. My husband and I can no longer travel the country speaking at conferences and to support groups (which we dearly loved to do) nor can I commit to writing more books, articles, or menus. Consequently, I will no longer be contributing articles to the Journal of Gluten Sensitivity. 
    My following books will still be available at Amazon.com:
    Gluten-free Cooking for Dummies Student's Vegetarian Cookbook for Dummies Wheat-free Gluten-free Dessert Cookbook Wheat-free Gluten-free Reduced Calorie Cookbook Wheat-free Gluten-free Cookbook for Kids and Busy Adults (revised version) My first book was published in 1996. My journey since then has been incredible. I have met so many in the celiac community and I feel blessed to be able to call you friends. Many of you have told me that I helped to change your life – let me assure you that your kind words, your phone calls, your thoughtful notes, and your feedback throughout the years have had a vital impact on my life, too. Thank you for all of your support through these years.

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    • Thank you so much for your very well thought out answer.  You're right, I'm just going wait 12 weeks because although I feel like crap, it is not horrible like I know it is for some people. How anemic were you? I ask because I have had low iron on and off 12 ferritin (22+ normal) 37 iron (normal 50 and above), and 10 transferrin saturation (14 is normal) have been my lowest.  I know this is not crazy low and what happens is I do respond to iron pills, but last time when I stopped taking them, I just drop down below normal.  The doctor said she would do an endoscopy if I didn't respond to the iron. But, I am back to a normal level now but just going keep taking iron because I'm afraid it will drop again.  I guess my question is would someone with celiac even respond to iron pills, or would it just stay low?  Thanks so much!  I've been kind of a  lurker on here for awhile and have noticed you are always so helpful!! 
    • You could very well have celiac disease, but there are 200 symptoms attributed to celiac disease and those often overlap with other illnesses.  You could get tested, but all celiac testing requires you to be on a full gluten diet for 8 to 12 weeks prior to a blood draw (it can take time for antibodies to ramp up and spill into the bloodstream).    You have been off for a month and it is possible that you could have healed.   Consider getting back on gluten and get tested.  Since you have Gastritis, maybe you can get a GI referral and an endoscopy to biopsy the stomach and the small intestine.  Only two weeks on a gluten diet is required for that procedure.      Learn more about testing: http://www.cureceliacdisease.org/screening/  
    • I'm a 30 year old female. All of my life I've had extreme bloating after eating. About 4 years ago I started having upper stomach pain. It's dead center below my rib cage where the diaphragm is located. As the years have passed the pain became more intense and more frequent until it was daily and affecting my ability to function. I had 2 drs say it was gastritis but prilosec did nothing to help. My head got to where it always hurt and I was exhausted constantly. If the pain and head fog wasn't already enough my joints started to hurt and swell making it hard to get out of bed. I'm 4ft 11 inches and was 130 pounds and my blood pressure was staying 160/105. I've always suffered with spells of constipation then episodes of D. I was getting mouth sores and had random rashes and itching mostly on my legs. I've also suffered anemia. When my stomach pain is at its worst I have foul smelling stools. All my liver and pancreas testing have come back normal. I tested negative for h pylori but am currently on carafate for ulcers. I'm going for another gallbladder ultrasound in 3 days as 9 years ago the ultrasound showed sludge so the dr is wanting to recheck. I've done research for a while now on gluten and have cut it out for over a month. I have noticed a significant improvement since stopping it and only have flare ups if I accidently consume gluten. So my question is does this sound like anything you've experienced and been positive for celiac? I also have numbness and tingling in my feet and hands 
    • Welcome!   With a sister who has celiac disease, you are at a much higher risk of developing it.  I would go for the complete 12 weeks.  Why?  Because doctors recommend anywhere from six to 12 weeks for the blood tests, but there has not been many long term studies to back up the claims.  Best to play it safe.  It sounds like you are not suffering too much (I had no GI symptoms and just anemia when I was diagnosed).  Ask your PCP to run the full panel, including  the DGP and EMA tests.  Why?  Not all celiacs test positive to the TTG, like me!  If your Kaiser doc refuses, please ask if you can be referred to a GI and select one who handles celiac patients.  Some celiacs are even seronegative!  In that case, going to an endoscopy is necessary.  Keep in mind that you might just be developing it or know that if everything negative now, you can still develop it in the future.  First-degree relatives should get tested every few years even if there are no symptoms.   What if your PCP refuses even after you show him the printed data supporting your claims (and the ones I made...so hit Dr. Google)? Get to another PCP or put your request in writing  via the patient portal or a registered letter.  Be nice.  Support your claims.  Ask for the full panel or to be referred to a GI.  In writing, they have to respond.   I do know that the TTG catches most celiacs, but not all.  If celiac disease is still suspected, you should move to the next series of celiac tests.  Unfortunately, to keep costs down, Kaiser just orders the TTG for initial screening.  You have to get around that.  I found that out when family  went in for testing and they had Kaiser.   Advocate for your health!  Document!  Save and print all test results and maintain file.   Take care!  
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