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Want To Cry-So Frustrated!


lvpriest

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ravenwoodglass Mentor

NOT being diagnosed celiac because of false negatives on blood tests has far reaching complex affects on people's well being. Hence the original post.

As a sero-negative celiac boy can I second that! If only doctors had thought to have me just do a dietary trial, since I was a classic celiac symptom wise, it would have made an incredible difference in my life and that of my children. It has serious effects on kids when they are watching their mother die a little more every day.


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  • Replies 51
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kwylee Apprentice

I got your point. I happen to disagree with you. It's nothing personal, but when you are around here longer you'll see what that diagnosis means to people and how not having it affects them.

False negatives are common on the blood tests. If you have severe reactions to gluten you have celiac disease in my opinion. It's a flaw in the testing methods that causes years of undue suffering and much psychological suffering from those who feel like a "fraud" because they don't have a "real" diagnosis.

When you say "I am glad you don't have celiac disease" well, it's not something to be glad about when someone knows they have celiac, has symptoms of celiac and are being told by doctors it's in their head. That lack of definitive diagnosis affects people's ability to comply with the diet, their ability to convince others of the seriousness of their condition, and their ability to have mental peace with the lifestyle. NOT being diagnosed celiac because of false negatives on blood tests has far reaching complex affects on people's well being. Hence the original post.

I do not believe for a second you don't have celiac disease with the reactions you have and the dietary response you've gotten. The tests are flawed.

So, wait. You're saying that even though I am still testing OK to absorbing nutrients, that I nonetheless have celiac disease? That anyone who is intolerant of gluten is to the point where they have celiac disease?

Ahorsesoul Enthusiast

So, wait. You're saying that even though I am still testing OK to absorbing nutrients, that I nonetheless have celiac disease? That anyone who is intolerant of gluten is to the point where they have celiac disease?

I just came home from my GI appointment. The results from the small intestine biopsies done 3 weeks ago says in black and white type: NO INDICATION OF CELIAC DISEASE. So if I go by this test, I do not have celiac disease which is incorrect. I have celiac disease but I was gluten free before the test so it does not show up because my intestines have healed back to normal. This does not mean I can eat gluten or that I do not have celiac disease. A gluten free diet is probably the best test.

kwylee Apprentice

I just came home from my GI appointment. The results from the small intestine biopsies done 3 weeks ago says in black and white type: NO INDICATION OF CELIAC DISEASE. So if I go by this test, I do not have celiac disease which is incorrect. I have celiac disease but I was gluten free before the test so it does not show up because my intestines have healed back to normal. This does not mean I can eat gluten or that I do not have celiac disease. A gluten free diet is probably the best test.

But if I did a stool test and it showed that I was genetically intolerant to gluten, does this mean I have celiac disease??? I am not being argumentative, I am asking simply because I want to know.

Janelee63 Newbie

Wow...this is an interesting thread. I am the one who does not believe that I have Celiac...but my doctor insists that I do have it. Long story short...I have been really sick lately...seems like it came on after I made a batch of chocolate cup cakes and ate more than my share! At any rate...I am starting to believe....I have an endoscopy tomorrow to check on my ulcers...and they are going to also do biopsies. A year and 1/2 ago my doctor told me I had a two stomach ulcers and that he also thought I had Celiac...HOWEVER....until this week when I met with his P.A....I never realized I had an inlarged small intestine...and it also showed something on the biopsy...but I can't remember what she called it...He never told me that. After this is done the P.A. is sending me to a nutritionist who specializes in Celiac. At any rate... Mine even told me that they don't really have "specific" markers for the disease. Not all the test are accurate...therefore...you pretty much have to try going gluten-free to see if you are. Iit seems like there are some really bad GI's out there. If you get sick eating it...that should be proof for the GI...especially if he can't come up with anything else.

kitgordon Explorer

I'm not sure anyone knows where the line really ought to be drawn between "gluten intolerant" and "celiac disease". If it makes you sick, don't eat it. If you have an "official" diagnosis, I guess you use it. If you don't (I don't), use the description that feels right to you, and don't poison yourself. I say I have celiac disease because my mother and numerous other relatives have been diagnosed, and I have the same symptoms, but the important thing is that you treat it and get well, not what you call it. My two cents.

Janelee63 Newbie

But if I did a stool test and it showed that I was genetically intolerant to gluten, does this mean I have celiac disease??? I am not being argumentative, I am asking simply because I want to know.

I am curious too. I am intolerant to a lot of foods....but it's not called anything...I am just intolerant.

Any what is the point in having an endoscopy if you have been off glutens for a while. Of course it's not going to show up?? Why do they do that?


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txplowgirl Enthusiast

I consider myself to have Celiac. I have not had any tests but get sick as well as have depressive and anxiety issues when I eat it. AND, untreated celiac can lead to cancers.

Seems to me with the family history I have I better stay gluten free.

On my mother's side. She just lost her only sister to esophageal and lung cancer three weeks ago, my mom is/was the baby of 9. Including this sister she also lost 4 brothers from stomach and colon cancer. Her father and 3 of his sisters to stomach and colon cancer. Several cousins ranging from brain, stomach, lung, breast and kidney cancer.

My father's side. My father, 1 of 11. died of colon cancer, 3 of his brothers and 1 sister ranged from having colon, stomach and breast cancer. His mother from ovarian cancer and her sister from lung cancer.

I have a 28 year old cousin who died from brain stem cancer. I have a 35 year old cousin right now who is dealing with liver cancer. He is a nephew to 2 of my cousins who have kidney and colon cancer. I could go on and on but I won't.

No matter what you call it, it still messes with you. DO NOT EAT IT!

kayo Explorer
I'm not sure anyone knows where the line really ought to be drawn between "gluten intolerant" and "celiac disease".

Exactly. I firmly believe they're the same thing but the right tests haven't been created yet and all of the genetic markers have not been discovered yet. I'm considered non-celiac because I don't have the currently recognized genetic markers yet I have all the symptoms and signs of celiac.

kwylee Apprentice

Went back through my research notes. Here is a good link from the American Celiac Disease Alliance that explains the difference between Celiac Disease, gluten intolerance and wheat allergy.

Open Original Shared Link

Janelee63 Newbie

Another thing to consider...I personally don't want all these ailments and diagnosis put in my medical records. It effects your ability to get life insurance and might effect your health insurance down the road. So having a gluten intolerance might be better from that stand point.

kwylee Apprentice

Another thing to consider...I personally don't want all these ailments and diagnosis put in my medical records. It effects your ability to get life insurance and might effect your health insurance down the road. So having a gluten intolerance might be better from that stand point.

Whoa, that's an excellent point. I work in life insurance and I can't believe I didn't think of that.

sandsurfgirl Collaborator

So, wait. You're saying that even though I am still testing OK to absorbing nutrients, that I nonetheless have celiac disease? That anyone who is intolerant of gluten is to the point where they have celiac disease?

Yes I am. That is my opinion. I personally do not believe in gluten intolerance. That's my personal belief based on a lifetime of experience and reading the experiences of many many celiacs. I think gluten intolerance is just baby celiac waiting to get ugly.

I was so sick I thought I was dying when I got diagnosed with celiac. I was mostly bedridden for months, just getting up to do the necessities and forcing myself to function for my kids. Yet there was dispute about whether I had celiac because only one of the panel of 5 tests came up positive.

I had been gluten light for years because I was told I had intolerance. Bullspit. I had celiac all that time. My history is long and sordid with all the terrible things untreated celiac did to my body including stunting my growth as a child and two horrific pregnancies resulting in premature birth for my son.

AND MY RECOVERY on the gluten free diet has been nothing short of miraculous. Not only my symptoms, but my whole personality has changed and I have a very long thread with all the people who have had the same thing happen to them. I thought I was high strung and type A. Turns out it was just gluten on my brain. You don't have that amount of evil happen to your body from an intolerance.

I had MAJOR electrolyte imbalance when I was first diagnosed to the point where I was so dizzy I could barely function. Yet my electrolytes showed up "normal" on the tests. Thank God I had a doc who had a clue who said he didn't care what the tests said, I needed electrolytes. Once I started replacing them and super hydrating I could function again. Still to this day I must mind my hydration or I will get sick.

My 6 year old son has severe reactions to gluten, including vomiting, stomache pain, diarrhea, nose bleeds, anxiety, facial tics, irritability, asthma troubles yet his blood tests came up negative.

He has celiac in my opinion. I think it's comforting to think you don't have celiac because maybe that means you can cheat a little. Maybe it means you can feel better that you might not have the higher risk of cancers and death, but the reality is that if you are reacting that strongly to gluten then I think it's celiac disease. I could care less what the inaccurate, poorly designed, weak tests say.

People suffer and are tortured needlessly over those tests and it's unconscienable that the medical community just lets it keep happening.

mommida Enthusiast

This is going to add even more confusion to the topic. Eosinophils in the digestive tract. i.e. eosinophils showing up anywhere in the digestive track from the esophagaus to the colon. These disorders are increasing in diagnoses. Perhaps just as difficult to get diagnosed as Celiac.

Specialist in the disorder will tell you it is a mystery. Some things seem to be connected to a majority of the cases.

-There seems to be a "trigger" food or possibly an airborne "allergen" (the word allergen is used for lack of a better term, normal allergic reaction can not be disgnosed in the body)

-Allergy testing is inconclusive. (My daughter who was diagnosed with EE and probable Celiac was negative for ALL allergens.)

-Symptoms really seemed like gluten reactions from her perspective. Except more vomitting and GERD.

- Eosinophils, once activated, stay activated for 12 DAYS. Eosinophils are whited blood cells usually reserved for combatting PARASITES in the body and have a small spearlike to attack. The cells are unable to discriminate and damage HOST tissue.

-The cells are not always visible to the scope as they can be embedded into the tissue. This gives the surface area the appearance of normal healthy tissue.

-The diagnoses relys on the pathology testing/report. The cells absorb the red dye staining. (As with Celiac, you are hoping the biopsy sample was taken from "the correct spot")

- Adults have to reach a magic number amount of Eosinophils for diagnoses.So I would definately ask what amount any testing you have done shows.

If you notice that you feel better avoiding gluten, DON"T eat it. If you are going to pursue a medical diagnoses, make sure you are with the best doctor you can work with.

There can be so many ways gluten is hurting people, and we may be at the tip of an iceberg!

kwylee Apprentice

Yes I am. That is my opinion. I personally do not believe in gluten intolerance. That's my personal belief based on a lifetime of experience and reading the experiences of many many celiacs. I think gluten intolerance is just baby celiac waiting to get ugly.

I was so sick I thought I was dying when I got diagnosed with celiac. I was mostly bedridden for months, just getting up to do the necessities and forcing myself to function for my kids. Yet there was dispute about whether I had celiac because only one of the panel of 5 tests came up positive.

I had been gluten light for years because I was told I had intolerance. Bullspit. I had celiac all that time. My history is long and sordid with all the terrible things untreated celiac did to my body including stunting my growth as a child and two horrific pregnancies resulting in premature birth for my son.

AND MY RECOVERY on the gluten free diet has been nothing short of miraculous. Not only my symptoms, but my whole personality has changed and I have a very long thread with all the people who have had the same thing happen to them. I thought I was high strung and type A. Turns out it was just gluten on my brain. You don't have that amount of evil happen to your body from an intolerance.

I had MAJOR electrolyte imbalance when I was first diagnosed to the point where I was so dizzy I could barely function. Yet my electrolytes showed up "normal" on the tests. Thank God I had a doc who had a clue who said he didn't care what the tests said, I needed electrolytes. Once I started replacing them and super hydrating I could function again. Still to this day I must mind my hydration or I will get sick.

My 6 year old son has severe reactions to gluten, including vomiting, stomache pain, diarrhea, nose bleeds, anxiety, facial tics, irritability, asthma troubles yet his blood tests came up negative.

He has celiac in my opinion. I think it's comforting to think you don't have celiac because maybe that means you can cheat a little. Maybe it means you can feel better that you might not have the higher risk of cancers and death, but the reality is that if you are reacting that strongly to gluten then I think it's celiac disease. I could care less what the inaccurate, poorly designed, weak tests say.

People suffer and are tortured needlessly over those tests and it's unconscienable that the medical community just lets it keep happening.

Reading your story, I can understand why you are so passionate about this, and I agree with you when you present that you are entitled to voice your opinion or decide what disease YOU personally have. I also agree that had I not taken gluten out of my diet, I could have developed celiac disease, cancer, etc, if my system was pre-disposed. Totally agree with that. I myself went cold turkey and have not purposely ingested it once (or casein, which affects me even worse than gluten). Nor do I intend to. I do not minimalize what gluten intolerance is.

I read the stories here and other forums of people whose lives have been horribly affected by celiac disease, the pain and the effects of malabsorbed nutrients, plus the other off-shoot conditions like arthritis, fibromyalgia, osteoporosis, and others too numerous to mention. For me to intimate to others that my story is the same is unfair to those who suffer as you do. Just as I would not tell people I have osteoporosis if I have borderline osteopenia, or diabetes if I have a glucose level of 98.

I've read that more than half of humans on the planet, and that's a conservative estimate, could possibly be intolerant to gluten. It is MY opinion that they all do not have celiac disease, just as a baby could be born genetically intolerant to gluten, but is not born with existing celiac. But there is 150% agreement that giving up gluten is the treatment.

Lastly, with all the talk lately of gluten intolerance, and the numbers of those realizing they have this are growing, I think it is important for those with celiac disease to be singled out for reasons of research and health care. My gluten intolerance was treated with simple avoidance. Other stories may not be the same.

Algegra Newbie

After reading your post I wanted to share what I had just written.

I have had stomach problems my entire life. First bad attack I remember I was nine years old. I was diagnosed at the age of 18 with a "spastic colon" and had a laparoscopy performed to rule out cancer, I was losing weight and in awful pain, after surgery was told congratulations everything looks normal. Since then I've had lots of diagnosis; pelvic inflammatory disease, duodenitis, IBS, dysmenorrhea, PMS, generalized anxiety disorder and GERD. Have had multiple tests; colonscopy, abd ultrasound and CT scans, upper GI and gallbladder removed. I've spent the last 23 years cancelling plans and missing work because of abdominal pain and diarrhea. A few months ago I developed melasma on my face (brown patchy areas) and while researching that I found it could be associated with Celiac disease and suddenly it seemed like everything made sense. So I went to my Doctor and asked to be tested, he seemed quite skeptical but I insisted. After reading and reading I was convinced this was the answer even though the diet seemed quite daunting I felt like I finally had an answer and I wasn't crazy, lazy or a hypochondriac. Then I go to the mail today and have a nice little postcard that says my celiac panel results were normal. I am so confused. Why is it so important to me to have a clinical provable answer. I feel like I needed it to commit myself to the diet. Has anyone else experienced this and how did you cope? It's not easy for me to open up and talk about this for years I've just tried not to talk about always feeling bad - topic doesn't make for a fun conversationalist. But I am truly at my wits end.

I've searched for an answer for so long that I am struggling with hopelessness about the situation but after reading your posts I know that this is what I have to do for myself.

kwylee Apprentice

Eosinophils in the digestive tract. i.e. eosinophils showing up anywhere in the digestive track from the esophagaus to the colon. These disorders are increasing in diagnoses.

Thanks so much for this info.

SueQueBlue Newbie

Wow-so many of the things I am reading from you guys sound just like my life!

My stomach issues started much later in life (I'm not that old, only 42). I always felt like I had IBS issues in my life, getting it from my mom. But it didn't really bad until about 2 years ago. I had stomach pain, had a CT and ultrasound for my gall bladder. They were both negative for anything. Then I went to a GI, told him my symptoms, and he still felt it was the gall bladder. Had a HIDA scan, that showed my gall bladder wasn't working very well. Had the surgery in June 09, but instead of feeling better, I felt the same, and then later, worse than before. I was having bowel issues, stomach pain and needed narcotics to get me thru the day. I went back to the GI, he did an upper endoscopy and it was negative for anything but mild inflammation, said it was IBS and gave me a prescription that did nothing. My primary care dx'd me with the IBS getting worse with gall bladder removal and Fibromyalgia. She did test me for Celiac, but I don't know which tests specifically, and they all came back negative. I even went to a Rheumatologist/Immunologist because I had some elevated inflammation markers, but he did a gazillion blood tests and nothing specific came up.

Since my GI locally didn't do anything for me and my primary care didn't know what else to do, she referred me to UC Davis in Sacramento. She felt they would know more, and might have some other ideas. Sure enough, when I got there, the dr said it was probably IBS due to my history, but she did a colonoscopy (negative) and a barium follow thru for the small bowel (also negative). The last thing she wanted me to do before settling on the IBS dx, she did an inflammatory bowel disease blood panel. Apparently, Celiac is one of the tests for that panel, and the EMA IgA came back positive. Just to be sure, they scheduled me for another upper endoscopy. Now remember, I just had one of these 7 months ago that was essentially normal. Well, not this time. My stomach had mild/moderate inflammation, and had villous blunting, and numerous "intraepithelial lymphocytes" (whatever that is).

My point is (sorry if this is too long), is that I had symptoms for 18 months and probably longer, and never tested positive until I was sick, sick, sick. Yeah, saying "I have Celiac Disease" makes people listen and realize it is an actual disease, and that makes you feel like you have some greater impact. But honestly, I wish I would have known more about how going gluten-free can heal you before I got to this point. So I say, if going gluten free makes you feel better, but you haven't been diagnosed, so what. The proof is in the results, and whatever you want to call it, do it anyway, and don't wait for an official 'diagnosis'.

I'm a newbie to all this-just diagnosed this month, so I don't have all the answers. I just know how miserable I have been and how hard it has been for my family to see me so sick. I am looking forward to feeling better, and I hope everyone who is suffering from this gets what they need to feel better.

Skylark Collaborator

I actually don't think all gluten intolerance is the same. There are documented effects of gluten peptides on innate immunity, as well as celiac humoral immunity, and documented effects of wheat germ agglutinuin on some sensitive people. Basically, gluten is somewhat indigestible and causes all sorts of problems. Wheat is also rich in fructans, which makes it a problem for people with fructose malabsorption or digestive tract bacteria that thrive on the fructans. There are also true allergies. I think we're going to eventually find out that wheat/gluten intolerance breaks down into a lot of different mixtures of celiac and non-celiac problems.

GFinDC Veteran

After reading your post I wanted to share what I had just written.

I have had stomach problems my entire life. First bad attack I remember I was nine years old. I was diagnosed at the age of 18 with a "spastic colon" and had a laparoscopy performed to rule out cancer, I was losing weight and in awful pain, after surgery was told congratulations everything looks normal. Since then I've had lots of diagnosis; pelvic inflammatory disease, duodenitis, IBS, dysmenorrhea, PMS, generalized anxiety disorder and GERD. Have had multiple tests; colonscopy, abd ultrasound and CT scans, upper GI and gallbladder removed. I've spent the last 23 years cancelling plans and missing work because of abdominal pain and diarrhea. A few months ago I developed melasma on my face (brown patchy areas) and while researching that I found it could be associated with Celiac disease and suddenly it seemed like everything made sense. So I went to my Doctor and asked to be tested, he seemed quite skeptical but I insisted. After reading and reading I was convinced this was the answer even though the diet seemed quite daunting I felt like I finally had an answer and I wasn't crazy, lazy or a hypochondriac. Then I go to the mail today and have a nice little postcard that says my celiac panel results were normal. I am so confused. Why is it so important to me to have a clinical provable answer. I feel like I needed it to commit myself to the diet. Has anyone else experienced this and how did you cope? It's not easy for me to open up and talk about this for years I've just tried not to talk about always feeling bad - topic doesn't make for a fun conversationalist. But I am truly at my wits end.

I've searched for an answer for so long that I am struggling with hopelessness about the situation but after reading your posts I know that this is what I have to do for myself.

Welcome to the forum Algegra! If you get your test results from the doctor and post them here, there are some smart people around who can help interpret them for you. The tests are not perfect by any means, and sometimes the docs don't even do all the tests they should. Guess the docs aren't perfect either!

Anyway, hang around and ask questions. There is also a pre-diagnosis/testing section here with lots of threads on testing etc..

It sure sounds like you could be one of us. The other test they do besides the antibodies tests is an endocscopy of the small intestine. You have to keep eating gluten for these tests to work though. IF you stop before testing the results are even more suspect.

rdunbar Explorer

I recently got Dr. Peter Greens' book "celiac disease; the hidden epidemic",

it's very informative, but was wondering why he recommends that people NOT self-diagnose for celiac disease. He says something about avoiding unnessisarily going on an inconvienent lifelong diet. With biopsies and blood tests being so inaccurate and unreliable, and doctors being so notoriously clueless what other option do you have other that to self-diagnose? I mean, what is so convienient about having chronic diarrea, horrible anxiety, torturous DH, tingling fingers and arm, achy joints, lose of balance,and the list goes on and on????

after going to the doctor and having him ask ME what is wrong with my scalp, I have no problem self-diagnosing when most of my health problems have almost completly resolved on a gluten-free diet, and the DH is getting better slowly, it's not nearly as painful.

Dr. Green states that DH is always celiac disease, so I really see no reason to get any testing(for myself). He says even skin biopsies for DH can be false negatives if you are not currently ingesting gluten.

He says biopsies are the golden standard for diagnosing celiac, but if the surface area of the small intestine is the size of a tennis court, how can you really know whats going on when you take a sample smaller than a postage stamp from it??

ravenwoodglass Mentor

After reading your post I wanted to share what I had just written.

I have had stomach problems my entire life. First bad attack I remember I was nine years old. I was diagnosed at the age of 18 with a "spastic colon" and had a laparoscopy performed to rule out cancer, I was losing weight and in awful pain, after surgery was told congratulations everything looks normal. Since then I've had lots of diagnosis; pelvic inflammatory disease, duodenitis, IBS, dysmenorrhea, PMS, generalized anxiety disorder and GERD. Have had multiple tests; colonscopy, abd ultrasound and CT scans, upper GI and gallbladder removed. I've spent the last 23 years cancelling plans and missing work because of abdominal pain and diarrhea. A few months ago I developed melasma on my face (brown patchy areas) and while researching that I found it could be associated with Celiac disease and suddenly it seemed like everything made sense. So I went to my Doctor and asked to be tested, he seemed quite skeptical but I insisted. After reading and reading I was convinced this was the answer even though the diet seemed quite daunting I felt like I finally had an answer and I wasn't crazy, lazy or a hypochondriac. Then I go to the mail today and have a nice little postcard that says my celiac panel results were normal. I am so confused. Why is it so important to me to have a clinical provable answer. I feel like I needed it to commit myself to the diet. Has anyone else experienced this and how did you cope? It's not easy for me to open up and talk about this for years I've just tried not to talk about always feeling bad - topic doesn't make for a fun conversationalist. But I am truly at my wits end.

I've searched for an answer for so long that I am struggling with hopelessness about the situation but after reading your posts I know that this is what I have to do for myself.

Welcome to the board. After you are done with testing do be sure to give the diet a good strict try. Your body knows the answer.

sickchick Community Regular

Always trust your intuition (and your body). You will figure it all out- you are in the right place- and don't let your DR get you down. B)

I had to beg my ND to have the blood test done- she was pushing a Thyroid diagnosis- but ALL my tests over the years were perfect.

My blood test was positive for celiac disease. :)

Breathe and hang in there! I know how stressful it is. ;)

Algegra Newbie

Thanks everyone. I called the office and asked that they mail the actual results to me - will post when I get them. Really appreciate the advice.

ravenwoodglass Mentor

Thanks everyone. I called the office and asked that they mail the actual results to me - will post when I get them. Really appreciate the advice.

Just keep in mind that false negatives are not uncommon. When your done testing give the diet a shot no matter what the results are.

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      Sorry for the long post. I’m 18, and I was diagnosed with celiac disease and type 1 diabetes (T1D). My transglutaminase IgA was >128 U/mL, EMA IgA positive twice, and I’m HLA-DQ2 and DQ8 positive. I’ve been completely asymptomatic since diagnosis, even when I cheated with gluten sometimes in the past and used to eat out(2-5 years ago) I don’t get the typical celiac reactions, which makes it really hard to know when (or if) I’ve been glutened. But for the past year, I’ve been the most strict with my diet, and that’s also when a bunch of new issues started. I eat completely glutenfree, never eat out, dont eat food that says „may contain gluten“.   Current Health Problems • Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds. Been ongoing for a year now. First noticed in the gym. • Abdominal bulge on the right side, not painful but seems to be getting slightly bigger. Doctor didn’t find a hernia on ultrasound, but it was done lying down (I’ve read those can miss hernias). Noticed it like 6 months ago, couldve been there longer. • extremely dry and mildly swollen hands (this started before I started excessive hand-washing), and bloated face. • Signs of inattentive ADHD (noticed over the past 3 years), now combined with severe OCD focused on contamination and cross-contact. • Growth/puberty seemed to started after going gluten-free. Before that I was not developing. Dont know if any of these are because of celiac as my dad doesnt have those and he is a lot less strict gluten-free then me. I also had pancreatic elastase tested four times: values were 46 (very low), 236, 158, and 306 (normal). Gastroenterologist said one normal value is enough and I don’t have EPI. Family doctor prescribed Kreon anyway (after I pushed for it), and I just started taking 1 capsule (10,000 units) with meals 2 days ago, but couldn‘t see effects yet because I’ve been constipated the last few days. Maybe because of thyroid. I don’t have Hashimoto’s. No thyroid antibodies. But I took levothyroxine for slightly low FT4 levels. My thyroid levels fluctuated between borderline low and low-normal. And recently lowered my dose so that may have caused the constipating. I probably didn’t need it in the first place, and am thinking about stopping it soon.   Current Diet Right now, I only eat a very limited set of “safe” foods I prepare myself: • Gluten-free bread with tuna or cheese • Milk and cornflakes • gluten-free cookies/snacks • Bananas (the only fruit I trust right now) I rarely eat other fruits or vegetables, because I’m scared of contamination. My dad, who also has celiac but doesn’t care about CC, buys fruits, and he might’ve picked them up right after handling gluten bread. That makes me feel unsafe eating them. Even fruit at stores or markets feels risky because so many people with gluten on their hands touch them.   My Home Situation (Shared Kitchen) We’re a family of 5. Only my dad and I have celiac. He eats glutenfree but doesn’t care about CC and sometimes (but rarely) cheats. My mom and siblings eat gluten bread at every meal. My mom is honest (so if i ask her to be cautious, she most likely would try to), but doesn’t seem to understand how serious celiac is. She: • Stopped using gluten flour • only cooks gluten-free meals (but they still heat up gluten bread and also cook gluten noodles) • Keeps separate butter/jam/jars for me • Bought me a stainless steel pan Bu we didn’t replace old wooden utensils, cutting boards, or other pans. The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes.   I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands   Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit?   Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either.   Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
    • lmemsm
      I've been making a lot of black bean brownies lately because it's one of the few gluten free dessert recipes that actually tastes palatable.  I've also seen chocolate cake recipes with black beans.  Someone mentioned a cookie recipe using lentils in place of flour.  Just wondering if anyone's run across any tried and true recipes using beans, lentils or peas for desserts?  I've seen a lot of recipes for garbanzo flour but I'm allergic to garbanzo beans/chickpeas.  Was wondering if adzuki or pinto beans might be useful in replacing some or all of the flour in baking.  Since gluten free flours can be crumbly was hoping the beans might help produce a better, less crumbly consistency.  Any recommendations for recipes?  Thanks.
    • lmemsm
      I've seen a lot of recipes for chia pudding, so I decided to make some with chia, water, cocoa and honey.  Didn't like the taste, so I added ground sunflower and ground pumpkin seed to it.  It tasted okay, but came out more like frosting that pudding.  I used to make pudding with tapioca starch, milk powder, water and sugar.  It came out very good but I haven't figured out what to use to replace the milk powder to make it dairy free.  Most starches will work in place of tapioca starch but quantity varies depending on the type of starch.  If I didn't add enough starch to get a pudding consistency, I'd add gelatin as well to fix it.  Avocado and cocoa makes a good dessert with a pudding like consistency.  Unfortunately, I have a bad reaction to avocados.
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