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Non Celiac Gluten Allergy?

Katsby

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Katsby Apprentice
Katsby
Posted

Ok let me be quick about my situation. A few months ago I was told to go on a Gluten Free diet for life. The thing is they don't really know what's wrong with me.

* I have had two celiac blood tests. One before gluten-free and one 9 months after gluten free (for a baseline in case I had to do a challenge). Both were in the same range of 12 with (0-19) as normal.

* I had an endoscopy that showed mucosal flattening of my entire duodenum, but the biopsies showed no villi damage. Even the Dr. wrote that celiac disease was suspected, but later found out that wasn't the case.

* I had a genetic test by my GI to look for DQ2 and DQ8. I was told I did not have celiac after the testing.

* I was told there was no possible way I could have Celiac Disease which is good.

SYMPTOMS:

* flushed, headaches, dizzy, dazed and kind of in a "coma", eczema on my hands, severe GI problems (chronic D, color change and fat in stool (I know gross), gas, bloating, very loud rumblings and noises, extreme pain on my left side where small intestines are (it feels like someone is flossing intestines with barbed wire), some swelling, etc. This all happens within a few minutes of ingesting gluten or wheat products.

My symptoms are why the Dr. found it so hard to believe that I didn't have celiac disease, plus I went through two GIs in the last year during all this testing.

I have been gluten free for one year and immediately within 2 days of stopping the diet my symptoms completely cleared up. My eczema hasn't been back, the headache, D and bloating, everything. Poof all gone. I even lost 40 lbs quickly that I had put on when all this started.

The thing is they don't know why. They can't tell me why I have mucosal flattening or why gluten affects me so badly. I have cried in my Drs office asking what exactly is wrong with me. I'd just like an answer. I've been given IBS drugs, but they never helped. I've also been given antibiotics to rule out bacterial overgrowths. I've had a colonoscopy to rule everything else out.

The Dr. told me I probably have an allergy to gluten like some people have to peanuts and that I should stay on the diet for life and that he doesn't think it's just in my head. He did tell me there were people out there doing research on those like me, but that didn't really make me feel better.

I feel so fed up like I'm wasting his time. I have thought about going to see an allergist, but I just feel so crazy. Does a non celiac gluten allergy even exist? I was sent to a dietician who kind of specializes in seeing celiac patients, but she couldn't offer me anything I hadn't already researched myself. I asked her if she had ever seen anyone like me before and she said only one other in 15 years, but that it didn't mean it didn't exist. That made me kind of feel a little crazier. I have been gluten free for a year now and thriving without symptoms as long as I don't eat any gluten (I am so sensitive I can barely eat anywhere but my house). My life has definately been impacted and everyone around me is very supportive, but I just want to know. I feel like nothing will change with the diet, but it's a piece of mind I think. Everywhere on the net I try to look up gluten allergy I just find celiac disease or gluten intolerance. I just feel like they know something real is wrong with me, but they just don't know what it is. I didn't really think it was just gluten intolerance since I figured he would have said that if it were.

Can anyone offer any insight?

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happygirl Collaborator
happygirl
Posted

There are quite a few names for it - gluten intolerance, gluten sensitivity, gluten allergy, non celiac gluten sensitivity, etc. Many find they do better on a gluten free diet, regardless of Celiac diagnosis.

Open Original Shared Link

You'll find lots of good information on this board. Welcome!

annaaspnes Newbie
annaaspnes
Posted

I have a gluten, as well as dairy, intolerance also. Dairy gives me intestinal problems but the wheat and gluten makes me bipolar can you believe it? Gluten intolerance can be equally as problematic to the sufferer as celiac.

irish daveyboy Community Regular
irish daveyboy
Posted

This is a posting I made previously on the subject.

.

May be worth watching the slideshow.

.

https://www.celiac.com/gluten-free/index.ph...mp;#entry532281

.

Best Regards,

David

joellen Newbie
joellen
Posted

Very interesting and informative comments. But, also confusing to me. What is considered "positive" for antibodies?

I went to a new doctor for bio-identical hormone treatment, and she ran many other blood tests as well. What is confusing to me is that according to the reference on the test results, the range of 4 for both wheat and casein is considered in class 0/1, which is "very low". And yet she is telling me to eliminate these foods. I know there was some concern about leaky gut, because the candida albicans was just slightly out of range. Normal being <1, and The IGG was 1.1, the IGA was 1.7, and the IGM was in range at 0.5. And the food allergy profile shows no allergy to either wheat or milk, both were <.35, class 0 absent/undetectable. In fact, there were no food allergies detected at all.

Don't get me wrong, I am all for following good health practices, but I am questioning the diagnosis of gluten and casein sensitivity, as well as the leaky gut. Very possibly, the candida is related to antibiotic use. How do I know?

I have drastically reduced my consumption of these foods, but have been unable to completely eliminate them. I already knew I consumed too many carbs, so that has been reduced as well. I have had no negative symptoms that I am aware of, and did not present with any celiac type complaints. Of course, the list of gluten intolerance symptoms include everything from headaches and fatigue to much more serious complaints. Who doesn't get headaches? I am fairly certain that my headaches originate from a disc degeneration in the cervical spine, which was diagnosed after an auto accident. Plus they seem to come from my neck, I can feel it.

I am not trying to trivialize the significance of the negative affects that gluten intolerance can have on your health, I just don't want a doctor or anyone else taking an alarmist or extreme position when it's not warranted.

I am interested in your thoughts.

ravenwoodglass Mentor
ravenwoodglass
Posted
Ok let me be quick about my situation. A few months ago I was told to go on a Gluten Free diet for life. The thing is they don't really know what's wrong with me.

* I have had two celiac blood tests. One before gluten-free and one 9 months after gluten free (for a baseline in case I had to do a challenge). Both were in the same range of 12 with (0-19) as normal.

* I had an endoscopy that showed mucosal flattening of my entire duodenum, but the biopsies showed no villi damage. Even the Dr. wrote that celiac disease was suspected, but later found out that wasn't the case.

* I had a genetic test by my GI to look for DQ2 and DQ8. I was told I did not have celiac after the testing.

* I was told there was no possible way I could have Celiac Disease which is good.

SYMPTOMS:

* flushed, headaches, dizzy, dazed and kind of in a "coma", eczema on my hands, severe GI problems (chronic D, color change and fat in stool (I know gross), gas, bloating, very loud rumblings and noises, extreme pain on my left side where small intestines are (it feels like someone is flossing intestines with barbed wire), some swelling, etc. This all happens within a few minutes of ingesting gluten or wheat products.

My symptoms are why the Dr. found it so hard to believe that I didn't have celiac disease, plus I went through two GIs in the last year during all this testing.

I have been gluten free for one year and immediately within 2 days of stopping the diet my symptoms completely cleared up. My eczema hasn't been back, the headache, D and bloating, everything. Poof all gone. I even lost 40 lbs quickly that I had put on when all this started.

The thing is they don't know why. They can't tell me why I have mucosal flattening or why gluten affects me so badly. I have cried in my Drs office asking what exactly is wrong with me. I'd just like an answer. I've been given IBS drugs, but they never helped. I've also been given antibiotics to rule out bacterial overgrowths. I've had a colonoscopy to rule everything else out.

The Dr. told me I probably have an allergy to gluten like some people have to peanuts and that I should stay on the diet for life and that he doesn't think it's just in my head. He did tell me there were people out there doing research on those like me, but that didn't really make me feel better.

I feel so fed up like I'm wasting his time. I have thought about going to see an allergist, but I just feel so crazy. Does a non celiac gluten allergy even exist? I was sent to a dietician who kind of specializes in seeing celiac patients, but she couldn't offer me anything I hadn't already researched myself. I asked her if she had ever seen anyone like me before and she said only one other in 15 years, but that it didn't mean it didn't exist. That made me kind of feel a little crazier. I have been gluten free for a year now and thriving without symptoms as long as I don't eat any gluten (I am so sensitive I can barely eat anywhere but my house). My life has definately been impacted and everyone around me is very supportive, but I just want to know. I feel like nothing will change with the diet, but it's a piece of mind I think. Everywhere on the net I try to look up gluten allergy I just find celiac disease or gluten intolerance. I just feel like they know something real is wrong with me, but they just don't know what it is. I didn't really think it was just gluten intolerance since I figured he would have said that if it were.

Can anyone offer any insight?

Hi, I am going to address the issues that I bolded in your query.

First off there are some of us who don't show up in blood work. If memory serves me it is about 30% according to the NIH.

Next you had celiac changes that your GI found, the mucosal changes, and you have 22 ft of small intestine. The damage from celiac can be patchy and your doctor may not have biopsied an area that was damaged.

As to the gene testing, in the US they only look for 2 recognized celiac associated genes but in other countries there are 7 more genes that are associated with celiac. I have a double dose of one of those 7 but gene testing would have me diagnosed with rhuematoid arthritis here. I am very thankful that I had gene testing done 5 years after diagnosis with celiac for that reason.

I know it is confusing but testing can tell you that you definately have it but can not say for sure that you don't.

You have showed positive on the most important test. Your bodies response to diet removed your symptoms. If the diet has helped you as much as it has your doctor was wise to tell you to keep to it. Sometimes our bodies give us the answer that testing cannot.

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    • Theresa2407
      Is this celiac?

      By Theresa2407 · Posted

      Usually when I digest gluten or wheat I have a 4 hour window before reacting.  If it is immediate it may be an intollerence to another food.  Dairy, Frutose, and bacteria (SIBO) will react with many of the celiac disease symtoms.Has your Doctor ran a  Fructose test which is measuring your Fruit Sugar?  A Hydrogen Beath Test which checks your intestinal bacteria and Dairy?After my biopsy and blood work, these (3) tests were also ran, along with allergy tests, which allery test was sent out of State.  It was a mouth swab. How fast you heal depends on the diet you are following… The following are my personal recommendations to healing. I talk to many newly diagnosed people who start the gluten-free diet with pasta, breads, snacks, and pizza. After a month or so, they do not know why they don’t feel any better and still are sick with their original symptoms: They worry the diet is not working for them. For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. They need a good support group, with people who have been through this and knows what works!  This is what I have found will work for you.                                                                                            First 6 weeks should be:                                                                                                                                 lean meat (beef, pork, chicken, turkey, salmon, sardines, buffalo, deer)                                                   fresh vegetables (steamed or roasted with a little Olive Oil) with 2 cups per day being raw (5 servings; a serving is 1/2 cup)                                                                                                                                      fresh fruit (3 servings; include strawberries, blackberries and blueberries daily)  Makes good shakes with Almond milk.                                                                                                                                        A hand full of almonds daily (pecans and walnuts can be substituted)                                                        brown rice, lentils, Citrucel daily (or the equivalent) Good source of fiber. I use Calm because my body doesn’t absorb Magnesium and I only need to take once in evening.                                                    No dairy of any kind (milk, cheese, yogurt, No breads, No past,  No oats, No pizza, No gluten-free beer, No snacks like cake, biscuits, pies, donuts.                                                                                                Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us.                                                                                              10% of people with gluten-free will be intolerant to dairy                                                                                  10% can not tolerate oats                                                                                                                     After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food.                                                                                                  Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable.                                                                                                                                              You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. 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I talk to many newly diagnosed people who start the gluten-free diet with pasta, breads, snacks, and pizza. After a month or so, they do not know why they don’t feel any better and still are sick with their original symptoms: They worry the diet is not working for them. For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. They need a good support group, with people who have been through this and knows what works! This is what I have found will work for you. First 6 weeks should be: lean meat (beef, pork, chicken, turkey, salmon, sardines, buffalo, deer) fresh vegetables (steamed or roasted with a little Olive Oil) with 2 cups per day being raw (5 servings; a serving is 1/2 cup) fresh fruit (3 servings; include strawberries, blackberries and blueberries daily) a hand full of almonds daily (pecans and walnuts can be substituted) brown rice lentils Citrucel daily (or the equivalent) Good source of fiber. No dairy of any kind (milk, cheese, yogurt) No breads No pasta No oats No pizza No gluten-free beer No snacks like cake, biscuits, pies, donuts. Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us. 10% of people with gluten-free will be intolerant to dairy 10% can not tolerate oats After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food. Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable. You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. This works if you have constipation or diarrhea. Meanwhile make sure you have had a Dexa test (bone density) and a blood test to check your vitamin and mineral levels: Zinc, D,K,B,C and iron levels. Don't take supplements while healing as your body is not accepting them and they will flush through your body. Have you had a breath test for Dairy, Fructose, and bacteria overgrowth? Should have done when first diagnosed. Remember to have a tTg IgA blood test repeated at 6 months then every year after, with another scope done in 3 years. Only way to know if you are healed. I don’t have all the answers; we are learning everyday new ways of doing things, but this is a start! Remember to have a tTg IgA EMA blood test repeated at 6 months then every year after 
    • Wheatwacked
      Is this celiac?

      By Wheatwacked · Posted

      Marsh 3b is the Gold Standard of diagnosis for Celiac Disease.  Until recently, regardless of antibody tests, positive or negative, you had to have Marsh 3 damage to be awarded the diagnosis of Celiac. As I understand you,  you were having constant symptoms..  Your symptoms improved on GFD, with occassional flare ups. Did your doctor say you do and you are questioning the diagnosis? Regarding your increasing severity when you get glutened it is "normal".  Gluten acts on the Opiod receptors to numb your body.  Some report withdrawal symptoms on GFD.  I was an alcoholic for 30 years, about 1/2 pint of voda a day. Each time I identified a trigger and dealt with it, a new trigger would pop up.  Even a 30 day rehab stint, with a low fat diet (severe pancreatis) during which I rarely had cravings.  Stopped at a Wendys on the way home and the next day I was drinking again.  20 years later, sick as a dog, bedridden on Thanksgiving, after months of reasearch, I realized that gluten free was my Hail Mary.  Back in 1976 my son was diagnosed at weaning by biopsy with Celiac Disease and his doctor suggested my wife and I should also be gluten free because it is genetic.  At 25 years old I felt no gastro problems and promised if I ever did I would try gluten free.  Well, I forgot that promise until I was 63 and my wife 10 years dead.  Three days of gluten and alcohol free, I could no longer tolerate alcohol. Eleven years gluten and alcohol free, with no regrets. Improvement was quick, but always two steps forward and one back.  Over time I found nineteen symptoms that I had been living with for my entire life, that doctors had said, "We don't know why, but that is normal for some people". Celiac Disease causes multiple vitamin and mineral deficiency.  It is an autoimmune disease, meaning your immune system B and T cells create antibodies against ttg(2) in the small intestine in Celiac Disease, and sometimes ttg(3) in skin in Dermatitis Herpetiformus.  'Why' is poorly understood.  In fact, it wasn't even known that wheat, barley and rye gluten was the cause.  Celiac Disease was also called Infantilism, because it was deadly, and believed to only be a childhood disease. So, as part of your recovery you must deal with those deficiencies.  Especially vitamin D because it contols your immune system.  Virtually all newly diagnosed Celiacs have vitamin D deficiency.  There are about 30 vitamin and minerals that are absorbed in the small intestine.  With Marsh 3 damage you may be eating the amount everyone else does, but you are not absorbing them into your system, so you will display symptoms of their deficiency.   As time passes and you replenish your deficiencies you may notice other symptoms improve, some you did not even know were symptoms. Our western diet has many deficiencies built into it.   That is the reason foods with gluten are fortified.  Gluten free processed food are not required to fortify.  Vitamin D, Iodine, choline.  The B vitamins, especially Thiamine (B1) run deficient quickly.  We only store enough thiamine for 2 weeks so the symptoms of Gastrointestinal BeriBeri can come and go quickly.  Magnesium, zinc, etc. each having its own symptoms affecting multiple systems.  High homocystene, an indicator of vascular inflamation can be cause by deficient Choline, folate, B6 and or B12.  Brain fog symptoms by deficient choline, iodine, thiamine B1. Dietary intake of choline and phosphatidylcholine and risk of type 2 diabetes in men: The Kuopio Ischaemic Heart Disease Risk Factor Study  
    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      I cut out the rice because it was affecting my stomach at the time ... not necessarily dermatitis herpetiformis. It was Tilda Basmati Rice, sometimes wholegrain rice. I was willing to do whatever it took to heal. Too much fiber also disagrees with me as I have UC.
    • trents
      Is this celiac?

      By trents · Posted

      But you didn't answer my question. When you consume gluten, is there an identifiable reaction within a short period of time, say a few hours?
    • Scott Adams
      Is this celiac?

      By Scott Adams · Posted

      You can still have celiac disease with negative blood test results, although it's not very common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/   
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