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      Frequently Asked Questions About Celiac Disease   09/30/2015

      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 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Gluten Intolerance And Low White Blood Cell Counts?
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Hello there. I'm new here.

I was just diagnosed with gluten intolerance today.

I am wondering if anyone else here has a low white blood cell count or had a low white blood cell count but going completely gluten free has raised it or at least made your blood levels normalize?

I've had a very low white blood cell for a very long time. Since I was in high school, at least. Nothing has ever helped it. I've had bone marrow biopsies and lots of blood tests that show nothing out of the ordinary wrong. I've been dealing with it for so long, but it's something I'll never get used to. Having a low white blood cell count is scary. My levels are sometimes in the dangerously low ranges. My white blood cell count is usually 1.9 - 2.9 (normal range is 4.0 - 10.5 mostly).

I have no idea how long I've been gluten intolerant, but I suspect it's been a long time.

Just wondering what your experiences have been with blood levels (Low white blood cell counts) and gluten intolerance/celiac.

Thank you!

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A lot of people have issues with blood counts of varying nature. I'd have your doc run a more comprehensive metabolic panel and check your trace elements and minerals. Iron is a common deficiency in celiac.

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A lot of people have issues with blood counts of varying nature. I'd have your doc run a more comprehensive metabolic panel and check your trace elements and minerals. Iron is a common deficiency in celiac.

Strawberrynin, I do know that my ferritin levels are very low. I've had that tested before. :)

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Hello there. I'm new here.

I was just diagnosed with gluten intolerance today.

I am wondering if anyone else here has a low white blood cell count or had a low white blood cell count but going completely gluten free has raised it or at least made your blood levels normalize?

I've had a very low white blood cell for a very long time. Since I was in high school, at least. Nothing has ever helped it. I've had bone marrow biopsies and lots of blood tests that show nothing out of the ordinary wrong. I've been dealing with it for so long, but it's something I'll never get used to. Having a low white blood cell count is scary. My levels are sometimes in the dangerously low ranges. My white blood cell count is usually 1.9 - 2.9 (normal range is 4.0 - 10.5 mostly).

I have no idea how long I've been gluten intolerant, but I suspect it's been a long time.

Just wondering what your experiences have been with blood levels (Low white blood cell counts) and gluten intolerance/celiac.

Thank you!

I have had life long low white cell counts and did some investigating on my own. I found out from a good hematologist that this is fairly common in people with autoimmune disorders, not just celiac Disease. The blood does not lie and many diseases and disorders will show in a person's blood work, in various ways if you know how to read it. It is also familial in my family meaning that most of my first degree relatives also have low white cell counts. They also have multiple autoimmune problems.

Going gluten free will not change this as Celiac does not go away, it is managed. You always have Celiac Disease, whether you follow a strict gluten-free diet or not. From my personal experience, it only matters if you become chronically ill. If you suffer from many colds and catch everything that comes down the Pike, then it may be a cause for worry. I never get sick anymore, now that I am gluten-free yet my white cell count remains low. I do not give it a second thought anymore and neither should you, unless you are always getting sick. These numbers are just "normal" for someone with autoimmune problems.

I was lucky to find a good hematologist because I wasn't about to undergo a bone marrow biopsy for something I have had all my life. If it were serious, I'd be dead by now! She wasn't even phased about it after questioning me about whether I get sick a lot or not. She told me right up front that it is just a common thing for people like us and not to worry about it. As most hematologists see really bad diseases on a daily basis, the ones that will kill you quickly, I felt lucky to "just have" a few autoimmune problems which can be controlled with diet!

Welcome to our world and I hope you feel better soon, once you go gluten-free. It's amazing the difference it will make!

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I have had life long low white cell counts and did some investigating on my own. I found out from a good hematologist that this is fairly common in people with autoimmune disorders, not just celiac Disease. The blood does not lie and many diseases and disorders will show in a person's blood work, in various ways if you know how to read it. It is also familial in my family meaning that most of my first degree relatives also have low white cell counts. They also have multiple autoimmune problems.

Going gluten free will not change this as Celiac does not go away, it is managed. You always have Celiac Disease, whether you follow a strict gluten-free diet or not. From my personal experience, it only matters if you become chronically ill. If you suffer from many colds and catch everything that comes down the Pike, then it may be a cause for worry. I never get sick anymore, now that I am gluten-free yet my white cell count remains low. I do not give it a second thought anymore and neither should you, unless you are always getting sick. These numbers are just "normal" for someone with autoimmune problems.

I was lucky to find a good hematologist because I wasn't about to undergo a bone marrow biopsy for something I have had all my life. If it were serious, I'd be dead by now! She wasn't even phased about it after questioning me about whether I get sick a lot or not. She told me right up front that it is just a common thing for people like us and not to worry about it. As most hematologists see really bad diseases on a daily basis, the ones that will kill you quickly, I felt lucky to "just have" a few autoimmune problems which can be controlled with diet!

Welcome to our world and I hope you feel better soon, once you go gluten-free. It's amazing the difference it will make!

Thanks, Gemini. It's ridiculous that I'm 25 and have had a VERY low white blood cell count most of my life and no one has found out the cause yet. I am tired of dealing with it NOW. I see my hematologist again in August. I am going to have to ask him to test me for as many autoimmune disorders that he can think of.

Also, from what I know, my parents don't have this issue with their white blood cells. It seems to be only ME. Unless my grandparents dealt with it, but I am not sure about that. Thank you for your reply. It means a lot to hear someone else going through the same thing as me.

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Thanks, Gemini. It's ridiculous that I'm 25 and have had a VERY low white blood cell count most of my life and no one has found out the cause yet. I am tired of dealing with it NOW. I see my hematologist again in August. I am going to have to ask him to test me for as many autoimmune disorders that he can think of.

Also, from what I know, my parents don't have this issue with their white blood cells. It seems to be only ME. Unless my grandparents dealt with it, but I am not sure about that. Thank you for your reply. It means a lot to hear someone else going through the same thing as me.

Doctors are not very well versed in autoimmune diseases but to my surprise, the hematologist was more informed and knowledgeable than any other doctor I ever saw. She smiled and told me that the low white cell count was a very common issue with multiple/single autoimmune problems. I thought why the hell don't the others know this! :huh:

I am 50 years old and have had this for at least 30 years. My numbers were sometimes as low as yours. I only see a doctor every 3 years so we'll see what happens on my next visit in February, 2010. I will have been gluten-free 5 years by then so it ought to be interesting.

Be aware that testing for autoimmune problems is very difficult. They do not always show up in blood work screening. Usually you develop certain symptoms and then go for testing based on your symptoms. It might be just the Celiac alone causing your low white cell count. All I know is the hematologist made it very clear to me that I was NOT to go home and worry about this.....as long as I didn't start being sick all the time. She had patients in her waiting room who were being treated for blood cancers and didn't want me freaking out thinking I was going to die. I've never had a doctor be so kind and concerned about my mental state before. As you must have realized, it's scary going to a hematologist because they generally diagnose and treat life threatening diseases. I was very thankful leaving her office that all I had were 4 autoimmune problems and nothing else! :o It's all relative.....

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I was very thankful leaving her office that all I had were 4 autoimmune problems and nothing else! :o It's all relative.....

Gemini, can I ask what FOUR autoimmune problems you were diagnosed with? I am trying to make a list of things to take to my hematologist when I visit in August. Thank you. :)

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Hello there. I'm new here.

I was just diagnosed with gluten intolerance today.

I am wondering if anyone else here has a low white blood cell count or had a low white blood cell count but going completely gluten free has raised it or at least made your blood levels normalize?

I've had a very low white blood cell for a very long time. Since I was in high school, at least. Nothing has ever helped it. I've had bone marrow biopsies and lots of blood tests that show nothing out of the ordinary wrong. I've been dealing with it for so long, but it's something I'll never get used to. Having a low white blood cell count is scary. My levels are sometimes in the dangerously low ranges. My white blood cell count is usually 1.9 - 2.9 (normal range is 4.0 - 10.5 mostly).

I have no idea how long I've been gluten intolerant, but I suspect it's been a long time.

Just wondering what your experiences have been with blood levels (Low white blood cell counts) and gluten intolerance/celiac.

Thank you!

I know I posted this before but I thought I would share this with you. I've had a low white count for years. It varies from 2.9 to 3.1. I work for a hematologist and she was never concerned. I'm having an endoscopy next week because my blood tests were high. I am 50 years old and I think I've celiac since a child. Anyway, now it all makes sense. I never knew that celiacs can have neutropenia (low WBC). I'm going to ask the doctor about other auto immune diseases too. My sister has type 1 diabetes also. It will be interesting to see if my WBC goes up once I go gluten free. Good luck with everything.

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Gemini, can I ask what FOUR autoimmune problems you were diagnosed with? I am trying to make a list of things to take to my hematologist when I visit in August. Thank you. :)

I have Celiac, Hashi's thyroid, Sjogren's Syndrome and Reynaud's Syndrome...the one where your fingers and toes turn white/blanched and the circulation shuts down temporarily. They can also become numb from this. The Reynaud's has improved dramatically since going gluten-free but it still happens, especially in cold weather. There really isn't a test that I am aware of for Reynaud's but it happened one day in the ophthalmologist's office and she looked down in astonishment because my hands turned dead white. She asked me if I had Reynaud's also and I just looked back and thanked her for confirming my diagnosis! :P

I also have tested positive high on my ANA and Rheumatoid factor blood test, which are for general inflammation (ANA) and rheumatoid arthritis. However, I have absolutely no symptoms of the problems associated with these tests so am not convinced I have them at all. No achy joints or muscles at all or stiffness for that matter so I choose to remain positive on that. My doctor thinks otherwise and has referred me to a rheumatologist but from what I can gather from people who have gone that route, you don't gain much by seeing one. Autoimmune problems are hard to diagnose and they generally don't make it official until you have flaming symptoms to match the blood work. I don't fall into that category.

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my white blood cell count has been low for years (I'm 29), and to the best of my knowledge no one else in my family is affected. I've been gluten free for five years now, and my wbc is still low--not dangerously low or anything though. I've never had a doctor worry about it, and I haven't shown awful symptoms related to it, so I just don't worry about it.

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Hello there. I'm new here.

I was just diagnosed with gluten intolerance today.

I am wondering if anyone else here has a low white blood cell count or had a low white blood cell count but going completely gluten free has raised it or at least made your blood levels normalize?

I've had a very low white blood cell for a very long time. Since I was in high school, at least. Nothing has ever helped it. I've had bone marrow biopsies and lots of blood tests that show nothing out of the ordinary wrong. I've been dealing with it for so long, but it's something I'll never get used to. Having a low white blood cell count is scary. My levels are sometimes in the dangerously low ranges. My white blood cell count is usually 1.9 - 2.9 (normal range is 4.0 - 10.5 mostly).

I have no idea how long I've been gluten intolerant, but I suspect it's been a long time.

Just wondering what your experiences have been with blood levels (Low white blood cell counts) and gluten intolerance/celiac.

Thank you!

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I have not been diagnosed with any gluten problems. I do have the symptoms though. I have had two blood panels done resulting in two low equivacal ratings. I have also had 2 upper GIs and a colonoscopy all negative. I have a low wbc, take b12 injections, and finished a 12wk megadose of vitamin d. I see a "neurologist", and oncologist/hematologist, and cardiologist for constant heart palpitations for two years now. My lowest WBC was 1.2 back in Jul 2001 no doctor caught my low wbc until two years ago and when a comphrensive review was conducted as far as they could go. The reason I'm responding is I have seen a couple of Docs who have advise me to stop gluten. I have and my WBC has gone up over a year and a half. I am now at 3.5 as of yesterday. I really don't know what to attribute it to but I suspect keeping up the vitamin D supps or being encouraged repeatedly to be gluten free. I have never had 3 in a row increases. I had just google the topic when I came up with the posting I'm responding too. Just trying to understand if this is a possible cause. I can't really say I feel any better for the better reading results but maybe in time. My understanding in talking to other where I live is it could take as little as 6weeks or 1yr to really get the full benefit with an additional 2years to peak. So until then I will keep up with my supps B12/Vit D and avoid gluten.

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I have not been diagnosed with any gluten problems. I do have the symptoms though. I have had two blood panels done resulting in two low equivacal ratings. I have also had 2 upper GIs and a colonoscopy all negative. I have a low wbc, take b12 injections, and finished a 12wk megadose of vitamin d. I see a "neurologist", and oncologist/hematologist, and cardiologist for constant heart palpitations for two years now. My lowest WBC was 1.2 back in Jul 2001 no doctor caught my low wbc until two years ago and when a comphrensive review was conducted as far as they could go. The reason I'm responding is I have seen a couple of Docs who have advise me to stop gluten. I have and my WBC has gone up over a year and a half. I am now at 3.5 as of yesterday. I really don't know what to attribute it to but I suspect keeping up the vitamin D supps or being encouraged repeatedly to be gluten free. I have never had 3 in a row increases. I had just google the topic when I came up with the posting I'm responding too. Just trying to understand if this is a possible cause. I can't really say I feel any better for the better reading results but maybe in time. My understanding in talking to other where I live is it could take as little as 6weeks or 1yr to really get the full benefit with an additional 2years to peak. So until then I will keep up with my supps B12/Vit D and avoid gluten.

Bear......I am happy to hear that your WBC has gone up! With all of the symptoms and health issues you describe, it sounds like you have Celiac and the doctors have just not been able to diagnose you. The rise in your counts could very well be from eating gluten-free. I have 4 autoimmune issues in total so I am not so sure if mine will ever rise up to a normal level. I don't really care because I rarely get sick so don't worry about it.

You may want to consider having your thyroid checked because heart palpitations are a symptom of hyper-thyroid and thyroid problems go hand in hand with Celiac Disease. Make sure you get copies of all results because doctors are notorious for not letting patients see their tests and then telling them everything is fine. It's worth looking into. I am surprised that the docs who advised going gluten free didn't want to test you for it, or did they?

Low WBC's are classic for autoimmune problems so you definitely have something going on which isn't being addressed by the medical community. I wish you continued improving health!

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Bear......I am happy to hear that your WBC has gone up! With all of the symptoms and health issues you describe, it sounds like you have Celiac and the doctors have just not been able to diagnose you. The rise in your counts could very well be from eating gluten-free. I have 4 autoimmune issues in total so I am not so sure if mine will ever rise up to a normal level. I don't really care because I rarely get sick so don't worry about it.

You may want to consider having your thyroid checked because heart palpitations are a symptom of hyper-thyroid and thyroid problems go hand in hand with Celiac Disease. Make sure you get copies of all results because doctors are notorious for not letting patients see their tests and then telling them everything is fine. It's worth looking into. I am surprised that the docs who advised going gluten free didn't want to test you for it, or did they?

Low WBC's are classic for autoimmune problems so you definitely have something going on which isn't being addressed by the medical community. I wish you continued improving health!

Gemini, I'm responding to a rather old post, but it's because the subject matter is of great interest to me and I wanted to a better understanding of your views on Celiac Sprue and low Red and White Blood Counts.

I was diagnosed Celiac in Sep 2008 via endoscopy. Prior to that, in 2005, I was diagnosed with a Thymoma, a tumor of the Thymus gland which is also considered a complication of the auto-immune system. After two rounds of chemotherapy, the tumor was removed with no further complications. However, during 2006 - 2008, I began to develop intestinal distress and by 2007-2008, I was having major gastric distress including what is known as "explosive" diarhea. After diagnosis, I followed the Dr's and Nutritionists instructions and did my best to become gluten-free. However, over the ensuing years, I have had bouts of "D" and stomach distress due to the ingestion of "hidden" gluten in restaurant food; even those that claim to have gluten free menus. (Sorry this is taking so long to explain).

The short of the story is that before diagnosis and since diagnosis, I have lost 80 lbs - down to my high school weight. Also, my blood tests have periodically shown mild to moderate anemia; example following:

RBC 3.12 Range 4.5 - 6.0

Hemoglobin 10.8 Range 14.0 - 18.0

Hematocrit 30.9 Range 40.0 - 54.0

Mean Copuscular Vol 99 Range 82 - 98

Mean Corpuscular HGB 34.7 Range 27.0 - 31.0

Recently, my White Blood Count (after taking 2 rounds of antibiotics and a couple rounds of steroids for pneumonia) was down to 3.7 range 4.0 - 11.0)

All these years my Internist has glossed over the low RBC and weird HGB and HTC counts without much comment except hmmmmmmmmm.....must be the Sprue. But now that the White Blood cound has also dropped, he's referred me to a hematologist/oncologist who is using unsettling terms like "possible myeloma or MDS" I've tried to help them connet the dots and look at my overall history, but they seem to be hung up on the white blood count.

Bottom line, I feel great and am an active 69 year old grand dad who just took an 8-yr old grandson to Washington D.C. and I had no problems with all the walking, Metro rides, heat, and exertions of the trip. My question is: WHY DON'T THE M.D.'S take my Celiac Disease more seriously and try to connect the Dots? I'm constantly having to remind them of my history and my struggles with begin glutened, losing and gaining weight, diahrea, etc, etc. But the hematologist seems to be rather focus on everything but that...........And advice or comments you may have would be appreciated. I'm scheduled for another blood test in July and pending the outcome of that will determine whether he wants to pursue a bone marrow aspiration, etc. I've already gone through an extensive blood test for protens and 24 hour urine test to rule out myeloma and leukemia. These were negative. But he still insists we need to look at MDS if the next white blood count comes back low.

Call me frustrated Bob!

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I was diagnosed with celiac 2 years ago and have had problems with my wbc for 7 years. They have ran every blood test you can think of, have had 2 bone marrow biopsys done, tested for leukemia, cancer and it has all come out negative. I have severe pain in my joints, bones and musceles and they can't figure out what's wrong. I switched oncologist/hematologist twice. I'm frustrated because I'm in constant pain and nobody can figure it out. I have lost lots of weight, I'm down to 100 lbs. 

They are trying to say its just the celiac. But why are my counts so low? Normal range is 4.5-11 I'm a 1.9

Red count normal is 150-500 and mine is 116

I forget things, headache, joint pain, depression, mood swings... I just don't get it.

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Low WBC's are common for those with autoimmune disease, and that coming from a very good hematologist I saw about 6 years ago.  She see's this all the time.  After 10 years gluten-free, I still have lower WBC's but it doesn't matter as long as you are not getting sick all the time.

I would say that if you have pain and are losing weight, there is something else going on and they haven't found it yet.......it probably is another autoimmune disease, which is common for us.  It can also take much longer to completely heal from Celiac, if you are older.  It took my cholesterol 10 years to come up to the levels that most people have so I know I am absorbing normally now.  I was 46 when diagnosed.  Muscle, bone and joint pain can just be from Celiac inflammation that hasn't calmed down yet.  Have you been screened for the other AI diseases that can happen with Celiac?

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    • Will my doctor test me? So many symptoms...
      Remember that you have to be eating a normal gluten diet for the testing so don't cut back & don't stop eating it. Make sure they do the full, current celiac panel: Anti-Gliadin (AGA) IgA
      Anti-Gliadin (AGA) IgG
      Anti-Endomysial (EMA) IgA
      Anti-Tissue Transglutaminase (tTG) IgA
      Deamidated Gliadin Peptide (DGP) IgA and IgG
      Total Serum IgA   
      Also can be termed this way: Endomysial Antibody IgA
      Tissue Transglutaminase IgA 
      GLIADIN IgG
      GLIADIN IgA
      Total Serum IgA 
      Deamidated Gliadin Peptide (DGP) IgA and IgG
    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
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