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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 Celiac.com's FREE weekly eNewsletter   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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Have You Been Told It Is All In Your Head?
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I have been about 10 weeks gluten free now after self-diagnosing myself. My family doctor would not re-test me for celiac (after he had tested me 3 years ago) even though I have a huge list of symptoms. Since I was not even certain what tests my Dr. did or if I was even eating a gluten heavy diet at the time, I decided to do my own trial and see how I felt. Three weeks strict gluten free and I had already lost weight, my bloated belly was almost gone, I had an abundance of energy, my digestive issues all cleared up and most of my body aches were gone. I felt almost like a new person. 

 

Then one day about 6 weeks ago I had some watermelon and got really sick from it. I was in pain for days and along with it came all of the bathroom problems again. I decided to stay away from watermelon. Then I had a stew with some onion in it and another time some gluten-free onion rings. Same problem as the watermelon. Then dairy was giving me problems. So I went off that as well. Now I find that am also sensitive to any sugars. One little amount of fructose or sorbitol sets me off.

 

Because of all this now I am on this restricted diet and I am having trouble finding things to eat so I can stay healthy. One of my friends knows about my food intolerances and today she told me she thought that maybe it is not my body that was having problems but maybe all of the symptoms I am having are all in my head or that I am think I am having these reactions, but I am really not. She said maybe someone should give me a placebo to see if my reactions are real or not. I was offended as to me these symptoms I am having are very real and I would like nothing but to feel good again. I hate having to cut out my favorite foods and be on such a restricted diet. It makes things very complicated and stressful.

 

I tried explaining to my friend about gluten intolerance/celiac and that sometimes some people can have problems with other foods after they remove gluten from their diet but she just doesn't understand. I tried to show her info on leaky gut as well.

 

Also, I recently had bloodwork done and I am on a bunch of supplements including Armour Thyroid medication. My results showed that I have low ferritin, low B12, low testosterone, high homocystiene, hypothyroid symptoms, and low fasting blood sugar (hypoglycemic).

 

Did you end up with multiple intolerances once you went gluten free? How do you deal with people who think you are making everything up?

 

Thanks a lot. :)

 

 

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they think you are FAKING DIARRHEA ?  how is that even possible......

 

people are idiots.  i'm so sorry.  

 

i'm sure people thought i had some kind of eating disorder before i got diagnosed.  my mother-in-law is a (here have a cupcake and get over yourself) jerk about it still.  who cares - notme!  lolz

 

i have been handing out the 'food journal' advice today all day so:  keep a food journal and write down everything that crosses your lips - try to eat simple and 'clean' no fancy spices and ingredients.  i hate watermelon, so nobody should *ever* eat it <just kidding 

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hi,

 

just to let u know ive gone through all that youve just written down. i went gluten and dairy free and within weeks all my bloating ,sickly feelings, joint pain ,reflux, dark repetitive thoughts( i never had the gastro symptoms)had gone. then i realised i had other problems. eggs are gone coz i never got on with them, soya just didnt agree with me, nightshades caused joint pain and made the rash on my hands and face flare up.most fruit gives me what i thought was oral allergy syndrome, and some veg doesnt agree.

 

all my tests for celiac were negative,and allergy tests were negative too. the nurse there said she would send me to speak to a cognitive behavioral therapist because of my restrictive diet. id retested the foods before i went just so i knew i wasnt making it up!! i declined her offer...

 

im now looking into histamines and salicylates as a solution

 

dont really have any answers for you im afraid. i have been avoiding situations that involve foods. and trying not to get into any conversations about food.. soz i couldnt be more help.

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Tell your friend that your symptoms are no more psychosomatic than her rudeness is. Both are very real. :angry:

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I usually do not bother to explain myself to anyone. .

No one I know who saw me dying from undiagnosed celiac would ever dare

mention "you're making this up" to me, but here is something you could ask:

 

"Why would I make something up? what would be my motive?"

 

and 

 

"Who the hell makes up hypothroidism, anemia and hypoglycemia?" That's not possible.

 

People who question your symptoms are not your "friends". Real friends are compassionate and look to understand what you are dealing with on a daily basis.

 

You do not "end up with multiple intolerances" hon---you had them all along. They just become more evident as you get off gluten, start to heal and see other things you may have not noticed before when you felt so crappy. You can resolve them as your gut heals and use an elimination diet to get it sorted out.

 

Hang in there. It takes time to resolve these issues and so, just stay the course.

 

PS

 

I love watermelon and I enjoy it often, but right now, it may just be too much for you to digest. My hubs cannot eat it, or any melons or cukes (same family of foods) Gives him stomach aches.

 

Take it out and try again later down the road.  Keep it simple for now. :)

Edited by IrishHeart
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People use to think I was making this stuff up.  Some still do.  However, now they often note my"red face" shortly before I start noting my other symptoms I have rashes at times which are very visable.  I spent an evening in a hotel bathroom 5 ft from the nearest family member.  Somehow, it doesn't seem to be as hard to convince them.

 

If I was doing this for attention, I would have quit long ago and done something interesting.

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People use to think I was making this stuff up. 

 

If I was doing this for attention, I would have quit long ago and done something interesting.

So true!

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Oh yea.  I had a friend tell me that all diseases start with unstable mental health, and I should really see a psychiatrist.  I didn't respond, still don't see a way to respond to that.  As to your original question, I couldn't tolerate soy, dairy, eggs, or most processed food additives after going gluten-free,   I can now, so that was relatively short lived.

 

I had such a strong reaction to quinoa that I'll never try it again  Fructose intolerance could be your "thing".

 

Try to pay attention to your food reactions and ignore numbskull friends/family; they probably mean well, deep, deep down.  (lol)

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Repeatedly usually by someone that had MD at the end of their name.

I once had a  doctor actually ask me if my husband and I were having problems :blink: when I had gone to him for abdominal pain .

 

My former PCP ( I fired her) actually said  to me that I needed to "just calm down" and take the drugs  ( Antidepressants and antianxiety  )   she wanted to prescribe and I would be fine. We actually got into a shouting match and she FINALLY  referred me to my current GI doc ,, I think she finally gave me the referral  just to shut me up .

My family and even my x husband ( may be one of the reasons he is my x ) constantly were telling me that it was all in my head and that I was exaggerating.

 

Now that  my niece (  + blood work and endoscopy) , both my daughters ( endoscopy ), 2 of my grandchildren(  + blood work)   and I  (  + DH biopsy and diet response )have been diagnosed with celiacs  they dont say much but most of my family   still refuse to be tested :ph34r:

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A common discussion between Celiac citizens (and many other disease sufferers), and their doctors, is that the gut or cognition problem is all in their head. Doctors make notes about the apparent mental health of their patient at many visits. I suppose I have had a dozen or more doctors tell me my health issues were somewhat or largely mental (except the psychiatrists they sent me to, who immediately began looking for the physical issue..ultimately my neurologic problems were explained to me as a vitamin/celiac issue by an eye doctor!). However, a common result of most gut disease is depression, partly from being sick and frustrated, isolated, and often a reaction to ssri's. Celiac disease and its consequences (like parathyroid disease) are well known to make you crazy, as your brain and nerves are attacked, sleep is destroyed, fatigue overwhelms the person, and they can't get proper nutrition.

Incidentally, I discovered I can't handle a common ingredient of watermelon, can't remember the name, but it is used in a supplement at the health food stores/vitamin pushers. Also, if you take thyroid supplement, beware of things that interfere with it, such as Acetyl L Carnitine, which is otherwise helpful for energy to some people (it was, to me) but according to the rxlist.com it can interfere with and lower thyroid levels. So can calcium. Please consider carefully finding foods you can eat without issue, then slowly experiment repeatedly to find out what you can't handle. (bananas...how could I turn up sensitive to bananas? Damn).

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It is very hard to figure out what exactly it is that you are reacting to.  I have often blamed it on one thing only to find that it was another.  In my case, I get sick the next day so that it could be anything I ate the day before.  It can take quite awhile to get it all sorted out.  You have to be patient.  Write it all down.  It's pain, but worth it.  It helps to keep your diet really simple with unprocessed foods and try not to change more than one thing a week.  It can take a week to notice a reaction to something.  Most people not in this situation don't have any understanding for it.  It's not worth mentioning it to people who are going to tell you that you are crazy, and yes I've been told that, especially by other celiacs.  I hope that you feel better soon.

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Nope, you can't think yourself into having the big D. Seriously.

On occasion I worry that some symptoms are more linked to stress than to something I ate, but it's usually a combo of the two, but if it's something "in my head", then calming down doesn't make the stomach pain go away.

The things that happen to our bodies are real, and are caused by things we put in them. Sure, you can end up with physical issues from stress and such, but with us it's more likely that the stress and anxiety were caused by something we ate in the first place!

 

Anyway, hopefully all your sudden sensitivities are temporary. Some people (not all) find that they get better as your gut heals, but you might be left with more persistent intolerances (I can't do dairy or soy, and things like eggs, brown rice, quinoa, etc bother me).

Sounds to me like you know your stuff, and are doing everything right.

Happy healing!

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My husband told the Dr. he thought I went running to the bathroom because of stress!! I was like "What?" What are you talking about?I am stressed because I have to run to the bathroom 10 times in an hr. not stressed and then having to go to the bathroom!! SO the next time I went to the Dr. By myself! It sure would be hard to remember to go to the bathroom 100 times a day and to say my gut is killin me all the time!! It's too much work to "fake" 

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My husband told the Dr. he thought I went running to the bathroom because of stress!! I was like "What?" What are you talking about?I am stressed because I have to run to the bathroom 10 times in an hr. not stressed and then having to go to the bathroom!! SO the next time I went to the Dr. By myself! It sure would be hard to remember to go to the bathroom 100 times a day and to say my gut is killin me all the time!! It's too much work to "fake" 

My BFF thought my migraines were all stress! And that I was depressed. Yes great way to deal with stress and depression curling up into a ball and not moving for 13 hours. I was depressed and anytime someone said anything I was like "You try living with chronic migraine and see if you get depressed!"  

 

I have a migraine now, even gluten free I still occasionally get them. I'd say I'm averaging one a month (a few days long) now which is a lot better than pre-gluten free when it was around 33% of the year. Had a lady complaining to me at work about how much she suffers with Migraine. One year she had 4 of them!!! And one was on her Birthday!!! I was not amused. Not one bit. She was not sympathizing with me she was trying to get sympathy. Sorry but if you're lucky enough that's all you suffer I'm really not the one to whine to. Any migraine is awful but really it's like someone whining to you they had 4 days last year they had diarrhea!

 

PS my older brother can't stand for me to say, "my guts hurt". He says, "ladies don't have guts". He's not trying to be funny either.

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Bah.  I've had issues my whole life.  My doctor told my mom when I was little that I had "stress" issues.  My daughter was diagnosed celiac a year ago.  I tested negative.  I've gone gluten-free with her (with the odd slip).  I feel a whole lot better, but I have to be very careful.  They found that there is "visible damage" where my large and small intestine meet - they do not know why.  But it was a relief to find a doc who took me seriously, looked into it, and found something.  I work in a hospital, and I am appalled at times by the way some docs treat their patients.

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Just one thought to bring to your attention, since you are only recently gluten free and probaBly still "learning the ropes".... is it possible the foods you are reacting to are cross contaminated with gluten? Watermelon gets cut on a cutting board- did you buy a new one yet? Onion rings may be made in the same fryer as other gluteny ones, etc....probably you already know this, but just wanted to make you aware in case you weren't.

Multiple sensitivities are nott uncommon in the beginning- I think our immune system must go a bit bonkers when we take gluten away. For a lot of people things calm down a bit after a few months. It does make it difficult to know you are doing the right thing though when it seems like no matter what you eat, you end up feeling awful! Hang in there, it gets easier.

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they think you are FAKING DIARRHEA ?  how is that even possible......

 

people are idiots.  i'm so sorry.  

 

i'm sure people thought i had some kind of eating disorder before i got diagnosed.  my mother-in-law is a (here have a cupcake and get over yourself) jerk about it still.  who cares - notme!  lolz

 

i have been handing out the 'food journal' advice today all day so:  keep a food journal and write down everything that crosses your lips - try to eat simple and 'clean' no fancy spices and ingredients.  i hate watermelon, so nobody should *ever* eat it <just kidding 

Thanks for this! That is what I thought too! How am I supposed to be faking diarrhea and big dark, sunken circles under my eyes along with all of the other symptoms that I had and some that I continue to have. Thanks also for the suggestion of using a food journal. I will have to give that a try. :)

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Just one thought to bring to your attention, since you are only recently gluten free and probaBly still "learning the ropes".... is it possible the foods you are reacting to are cross contaminated with gluten? Watermelon gets cut on a cutting board- did you buy a new one yet? Onion rings may be made in the same fryer as other gluteny ones, etc....probably you already know this, but just wanted to make you aware in case you weren't.

Multiple sensitivities are nott uncommon in the beginning- I think our immune system must go a bit bonkers when we take gluten away. For a lot of people things calm down a bit after a few months. It does make it difficult to know you are doing the right thing though when it seems like no matter what you eat, you end up feeling awful! Hang in there, it gets easier.

You are totally right! The watermelon was bought at the grocery store and was already cut up so it could have been cross-contaminated. I did make some onion cakes at home (being careful about cc) and they made me sick and then I also got sick again when I ate out at a gluten free/vegan restaurant and the onion rings and stew with onions in it could have also been cross contaminated, even though it was off the gluten free menu. The reason why I think why these situations are more of a fructose malabsorbtion reaction is because each time I ate the watermelon and onions I was running to the bathroom with (sorry in advance for the TMI), the explosive gas for hours, watery d, fatty stool, mega cramps where I couldn't stand up straight and for two days later I was still burping onions. They were experiences I never want to have again. Yikes! Way worse that gluten exposure where I my symptoms also come on shortly after exposure but the difference is my stomach just bloats up, I have stomach cramps, foggy head, extreme exhaustion, d followed by c for days after, headache etc.

 

Also, I think I may have a sugar problem in general because of my hypoglycemia. Lately whenever I have something with the slightest amount of sugar in it (even fruit) I get really light headed and dizzy. I am not sure what that is all about but hopefully it resolves soon.

 

I have been eating home exclusively for the past few weeks so I can avoid cc but I am still feeling crappy. I am too scared to try onions or watermelon again for fear of the very painful symptoms.

 

Thanks again for taking the time to reply and for your suggestions.

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Thanks everyone for your comments and suggestions. It feels great to know I am not alone and that others have been in similar situations. Also, thank you for your suggestions. I am crossing my fingers that I get all of my intolerances sorted out soon. It is hard to know what to eat anymore and I am getting bored with the same-old that I have been eating for the past little while.

 

I am seeing a MD/naturopath doctor who comes highly recommended. He is not cheap so hopefully I am on the right track with him. I did decide to get the ELISA food intolerance panel done in desperation and I should have the results in the next couple of weeks. I am interested to see what the results say.

 

We are going to Disneyland in 2.5 weeks and I am kind of worried about what I am going to eat on my gluten free, dairy free, soy free, mostly sugar free diet without being able to cook any of my own meals.

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I have only had a few Migraines in my life!! I wouldn't wish that on anyone!! I have always prided myself for not having headaches on a regular basis! When I went to the Doc and he asked me I told him , I have been having headaches! I NEVER have head aches!! I have always prided myself for never having head aches!! And now I am getting them!! I was kinda Glad to hear I had Celiac!! Just because there was an answer! 

I truly hate to hear of anyone suffering!! I sure hope you get your answers!! It does tick me off when my Dr. doesn't believe me!! 

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Lovechild

 

Just to add: I think Mitzi may have meant your own cutting board at home may be a culprit if you cut up watermelon on it after using it for bread..

I can honestly say that the cut watermelon in the produce dept. has never glutened me. The produce section is not also cutting up bread

for anyone, I am sure. The machines are cleaned and it is highly unlikely gluten is involved. IMHO.

 

Disneyland is very gluten free friendly. People report wonderful experiences there. Have fun! :)

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Not to my face but I think people thought I was depressed and was just using my stomach as an excuse (like kids do when they wont go to school).

 

I have, like you, serious issues with food. All I can eat is rice (and ricecakes), rolled oats (not quick), milk, cream, butter, salt, white sugar, meat (not pork), eggs and decaff. I eat cheese too but I think it's problametic. That's it for now!

 

Good luck, it took me 3 years to find my list :)

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A common discussion between Celiac citizens (and many other disease sufferers), and their doctors, is that the gut or cognition problem is all in their head. Doctors make notes about the apparent mental health of their patient at many visits. I suppose I have had a dozen or more doctors tell me my health issues were somewhat or largely mental (except the psychiatrists they sent me to, who immediately began looking for the physical issue..ultimately my neurologic problems were explained to me as a vitamin/celiac issue by an eye doctor!). However, a common result of most gut disease is depression, partly from being sick and frustrated, isolated, and often a reaction to ssri's. Celiac disease and its consequences (like parathyroid disease) are well known to make you crazy, as your brain and nerves are attacked, sleep is destroyed, fatigue overwhelms the person, and they can't get proper nutrition.

 

Agreed. And to add to that my natural doc was telling me that most of our serotonin is produced in our gut. So if we have things like chronic D or chronic vomitting we lose not only good bacteria but serotonin which is a one of our mood stabilizers.

 

So it would make sense that people with unhappy guts could be sad/depressed people, but generally it's not clinical depression. It's a lack of serotonin. I found this interesting and of course I take serotonin now with about 20 other supplements because of my colitis (chronic D, yeah :wacko: ) so it does improve my moods.

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Seratonin is indeed produced in the gut.

The reason why people with impaired guts get depressed is because it is not being produced..... AND other neurotransmitters are not functioning as they should, either. It is a cascade effect.

It is not lost, per se....it just is not being produced--as it should be--in a normally healthy, functioning GI tract.

 

My celiac-induced depression and anxiety disappeared off gluten and after healing my gut.

When I took drugs given to me for "depression and anxiety" (before DX), it just made things worse.

Insomnia, agitation, etc. so I KNEW it was not the answer. I am not a depressive personality at all and I never had anxiety in my life UNTIL I was sick from undiagnosed celiac and malabsorption

 

Here's the deal....if anyone is a celiac or a NCGI, gluten will mess with your head. Period.

Take gluten out...........be patient, heal... and you'll feel better. (for the vast majority of celiac-related mental health issues)

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yea the cutting board thing!! I usually try an cut stuff on a plate. But sometimes I do cut on a stone. Is a clean soap stone ok if it is cleaned between times? I have always hated plastic cutting boards. 

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    • Yep no fruit, juice, sugar, or grains like oatmeal. The sugars glucose, fructose etc. Are common causes of flares in some. Sugar free fiber like nuts, but butters, cocanibs seem to be great for me. Keto diet sugar free high fat, mostly over cooked to mush or blended works great for me......heck as a baker I had to invent low carb, grain free, starch free bread. Sorta lead to a god like revelation and business took off with diabetics and my bakery.
    • Gastritis was my initial diagnoses before finding out I had celiac. The pains from the gastritis were terrible. I had to wake up in the middle of the night to eat cause I felt nauseous. The Doc prescribed me omeprozole and antacids. I took the meds for about a week but I cured it mostly by not drinking and eliminated caffeine intake. Alcohol was one of the main causes for mine 
    • The UC is a whole different beast. I’ve been eliminating tons of food. Meat is definitely good to me. I can eat all the steak, chicken, and pork without problems. I agree that paleo would be great for me. I’m gonna look more into their recipes.  Have you had any problems with fruits and veggies causing flare ups? I make smoothies with mixed berries, banana, gluten free oatmeal, spinach, and a splash of juice. It seems to be a cause. Maybe it’s the high fiber? I’m not sure. That and caffeine. I’m having a hard time eliminating caffeine though  
    • Pain wise a glutening celiac gets me more central gut pain and much worse with sharpness, urge to vomit, gurgles etc. UC is more along the the outside edges of your abdomen from the sides, lower area around the belt line, and upper area right under the rib cage, and is more of a boat and pleasure pain like your intestines are huge feeling.  UC triggers alot more gas, and makes you want to lie down I get the urge to massage and press on the pressure areas as it seems to help.
      Timing wise Celiac glutening I notice within 20-60mins and main vomiting starts in 1-3hours after eating it. UC flare you get it like 4-18hours or later depending on transit time of your food. A glutening will normally result in both a celiac reaction and a later UC reaction. For me a gluten CC or consumption issue also causes neurological symptoms, this is not true for some people but for me I also have a gluten ataxia, so the anxiety, panic, fog, mind looping, numb hands, loss of coordination or straight up motor loss is definite sign for me. Others will have to keep track with a food diary to nail down there own as every person can have a slightly different reaction.

      I also find with UC I do not directly vomit, Sometimes with UC it can trigger constipation and if not remedied in 12-24 hours leads to m system backing up and vomiting. Celiac can also cause me constipation but there is a slight difference in where it seems to get stuck at first. Hard to explain but you can sort of feel it. Also I find a gluten celiac response will result in a week or more of constipation issues. Starting mid section then moving to the outside gut area and  but some people do not get these and get D instead. So this is not very reliable.

      UC flare ups for me with my damage also always have bloody stools, worse flare ups its not just streaks but clots. Red and Dark red show it is in the large intestines. If you get tar like black  and red it is either a sign it is way back in the large intestine or in the stomach or small intestine. This makes my Anemia SOO much worse. Imagine how you feel with the loss of blood coupled with inability to efficiently absorb nutrients like iron and magnesium

      Thing to recall is UC is mostly the large intestine while celiac is mostly the small, so symptoms and trying to get the feeling of where the problem is can help.  Also if you get a glutening expect to have the UC flare up right after the celiac flare up.

      NOTE it is hard for me to say still, on the exact details and clarity, it has been since june of last year that I had a major gluten consumption issue. UC I get more regular but without the direct comparison in a while my memory is a bit iffy. Just trying to recall those exact pains and feelings from that last time. Also UC seems to wax and wane in and out while almost always being present for months in the background you just feel a bit off in the gut. SO many triggers, I felt that for years I swear til I went to this keto diet and dropped all fruit, sugar, carbs, and grains. Could have been the anemia, but I think it was more of a combination of the inflammation, bleeding, gas, and just being uncomfortable.
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