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Elevated Iga From Celiac Disease Test. I Do Not Have Celiac Disease…

Astrongtower

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casuallythere Explorer
casuallythere
Posted
23 hours ago, kareng said:

Actually, depending on why you can't have gluten, it does make a difference.  For example. Fodmaps - you can ften have a small amount of gluten - maybe 1 piece of pizza even - with no ill effect.

 

I think you are just here to argue & have no real interest in Celiac disease or gluten intolerance.  But that is just my theory.

You really hurt my feelings. I think you should ban yourself from these forums.

The Celiac Genetic Test was 700 dollars. And I have taken several other blood test in the past 4 years, every year. If you read this whole thread you can see just how serious this is to me. You think I am doing all this for fun? Just so I can log on to this website and piss people off?

Maybe I am in denial of what I have, maybe this is how I am coping with it, I don't know. But what I do know is that you went to far.

23 hours ago, Ennis_TX said:

Umm, for me personally, it was literally killing me. Celiac is a autoimmune disease, that same immune system that kills germs, well it goes after gluten in people with celiac disease and often mistakes the intestines, nervous system, brain, joints etc. Different people are affected differently by it, but in general its is like you body fighting a germ/disease. The smallest amount of gluten will trigger it, and the response will keep up for weeks and even months. Now the amount can trigger the severity of the reaction sure but any amount will cause it.

Think of it like this every time it happens your own immune system starts the attack run. and will hit then wean off over weeks. Again the response and areas it attacks vary from person to person, But this damage is accumulative, it can take years for the intestines to heal if you stay strictly off it, if it effects your nerves/brain it can take a whole lot longer to heal 5-10 years even before it is noticeable. It attacked my brain and nerve systems along with my intestines, been gluten-free for over 3 years now. Docs just did a follow up my intestines are finally starting to heal, some foods I can eat again that I had become intolerant to, but my brain damage is still present, my hands still lack feeling (tad bit better but still can take a min to notice I just grabbed a hot pan).

I ignored my symptoms for years and thought it was normal at first, it got progressively worse. Then when the brain and nerve issues hit the point of me going insane, with major brain fog, inability to do stuff I used to consider normal, everyday things stumping me. It was driving me mad, top it off with gut pains that would lay me out for a day or so, loosing feelings in my limbs, constipation for 5+ days then random purging.  It just kept getting worse and worse the last few years til I was running a bucket list thinking I was dying before we figured out it was gluten causing it. Would I risk going back on it again? NEVER that damage and  the progress I made is just not worth it. If I had gone gluten-free years earlier perhaps I would be doing computer programing still instead of being on disability and living a bloody bubble life.

Mine again is so bad now I will be laid out on the floor puking so that it contains blood, in gut wrenching pain for 6-8 hours unable to move. This happened last june when I decided to eat out at a place with a friend and only later learned of how they prepped the food. My heart rate monitor actually said my heart rate was in the 30-38 range for couple of hours. But that's due to how sensitive I have become. If your confirmed a celiac via diagnoses I suggest you get off it now, never touch the stuff so you do not have to put up with this bull S**t. Check my profile for other health issues that resulted from my issues and ignoring it, ask "Is that worth it"  

As for your kids and everything, Man they make gluten-free pizzia, they make great snacks that are gluten-free, Enjoy Life has all kinds of cookies, and snacks, Check the brands Ivan's, Udi's, Van's, Enjoy Life, Gerbs, etc. You can get mostly everything gluten-free. Be lucky you can still eat dairy, soy, corn and everything else processed right now. They can grow up eating the gluten-free versions of everything and never know the difference. Switch now and save the hassle, celiaic is genetic, there is a chance your kids might get it even worse then you. Save them the trouble if I was you and start it off right.

 

This is a horrible story. I am so sorry. I do not know what to say. I guess Celiac can effect different people in different ways. I hope that you feel amazing after staying of Gluten many years to come.

All I know is that my Dad was on the floor screaming in pain with Gas, etc. He got off gluten and felt better. However, before he knew he eat tons and tons of Bread and Rolls like it was going out of style.

I never eat as much as bread as him. However, my symptoms where diarrhea a lot, bloating, gas, IBS, head aches, the only reason that maybe they are not worse is because my dad had it and told me about it. So I started to ask my Doctors to check for it and my levels have been increasing. So therefore I guess I am catching it early. However, I just wish I know if I have it 100% or not. I guess I'll never know because I have decided not to do the Biopsy. I have enough information to know until they have better tools out there to figure all of this out. That I have a gluten intolerance, or an extremely high chance of getting Celiac.

So why do I need a Biopsy, I do not in no way want to develop any worse symptoms. Thank you for sharing yours to help me stay on a strict diet. 

 

22 hours ago, cyclinglady said:

While the risk of developing lymphoma is RARE, it is a possibility and it has been documented.  We just lost a forum member to Lymphoma.  Really.  She was real.  I took the time to find her obituary.  I was so sad.  We all became so attached.

Why did she get cancer?  Well lots of reasons, but she was a little shop owner who sold guitars and taught lessons.  She did not make enough to pay for health insurance and  rarely went to the doctor.  Read her story for yourself:

It is not my intent to scare anyone.  The cancer risk returns to normal if you have celiac disease and you are gluten free. But anyone struggling with a celiac disease diagnosis should read the FACTS about this disease from research-supported sources and not take the advice from non-medical personnel, like your Dad, as fact.  We are on this forum to offer advice.  More often is is just to deal with the day-to-day issues of being gluten free.  But medical issues/advice should be researched.  Unless you are EXTREMELY intelligent and have common sense, most of your medical information should come from a person who has a medical degree.  As much as I love reading Dr. Google, I still work with my doctors who might make mistakes, but are still better equipped to deal with medical issues than me.  

You can avoid gluten.  Your doctor is mis-informed.  Chances are he is dealing with  patients (my own GP has admitted that she has two celiac patients who do not adhere to the gluten-free diet) who are not trying hard enough.  It is all about choice.  

I am sorry that you are in diagnostic limbo land.  I am sorry that your case in not clear cut.  But you have two choices: 1) continue to eat gluten until your blood tests validate your diagnosis or assist in going forward with an endoscopy or 2) go gluten free now.   No one can decide that for you.  Only you.  

Good luck.  

See this is exactly what I am trying to hone in on with my final research to this whole situation.

What I do know:

1. I am going gluten free in some form of fashion, I got the gluten genetic test and it was positive.

2. Gluten is bad for me, whether it be intolerance, or Celiac, I do not want to develop Celiac or something worse.

3. I have researched this to the bone. Only thing left is what the last person commented on, my personal choice on what to do. I believe I have all of the facts to the best of my ability at this time.

4. Decide

What just makes this so hard is that my personal GI Doctor wants me to get back on gluten and perform Biopsy. I do not want to do this. Knowing that it could be a hit or miss depending on whether he gets a good sample or not. He could grab a clean sample right next to a bad sample. I have been reading those university posts, and have found that you have to have several Biopsy's to confirm Celiac. To me this is outrageous. I believe I have enough information to knot that I need to stay away from it.

 

41 minutes ago, GFinDC said:

Hi CT,

Celiac disease is an autoimmune condition.  Once your immune system learns to fight a pathogen, it will always fight that pathogen.  Eating any gluten ramps up the immune attack on your body.  The immune attack continues until all the gluten is out of your body and the immune system decides it's safe to stop attacking.  It could take months for the immune system attack to settle down again.

So, all that time your body is destroying itself.  People have many varied symptoms including pain, nausea, rash, joint paint, etc.  It's not fun to eat gluten if you are symptomatic.

Reactions / symptoms may change in time also, and get worse.  Or begin to affect other areas of the body.  Some people with celiac develop additional AI diseases also.  There's an idea that people who continue to eat gluten are more susceptible to getting additional AI diseases.  Anecdotal evidence seems to show that.

Sure you can get celiac.  Anyone with the genes can get celiac disease.  People with celiac disease tend to make more zonulin in their guts.  There may be a link between celiac disease and the extra zonulin, gluten, and bad bacteria in the gut.  As in, maybe all 3 need to be present for celiac disease to develop.  So perhaps not eating gluten would protect you from developing celiac disease.  But the final answer on how celiac disease starts is not known yet.  Or how to prevent it.  You have to decide what to do based on what we know now.  Which is more than nothing and less than everything.  But now we see as through a glass darkly.

I hope your dad stops eating gluten.  It's not good for his health and his gut.  There are plenty of other foods to eat that don't have gluten in them,  And lots of gluten-free subs for common foods.

Thank you for explaining it a little more clearly. This really helps.

I really like your comment about me making the final decision.

Here is my theory on whats going on with my body. I believe I posted on a nurse site and got some of this idea.

Your body reacts to Gluten. As you say, stays in a fighting stance for a very long time. It ramps up things like IgA. Fights and Fights. However, one day all of your blood levels drop, your body gives up, and thus makes you susceptible to infection, and other diseases. I believe my body has not done this yet, but is heading in that direction full steam ahead.

I believe I have several options here.

1. Go 100% gluten free for several years, never cheat, and let my body and stomach lining, to heal my " villi". I am prepared to do this and in fact have already done so. I have gone 100% gluten free for about a month now and feel amazing.

2. After 2-3 years of strict gluten free, re-introduce extremely small amounts of gluten in my system after my villi has 100% recovered. I know that everyone on here disagrees with this including a Clinical Doctor for Celiac which posted her comment here:

Open Original Shared Link

I was am on the end.

My Dad has done this and he is fine. No one has given me a concrete reason on why not to do this. I do not see how going off gluten and restoring your "villi" to 100% and letting your system rest, you can re-introduce a little bit of gluten. I need a lot more help understanding this part. To me its like smoking or drinking alcohol, ofcourse you can do damage to your body, people know it all the time, right on the box says, causes cancer, people still do it like weirdo's right? Well I guess call me a weirdo, I don't think I will become a gluten alcoholic and drink to the point of hurting myself. There is nothing wrong with a drink or two here and there.

3. Get back on gluten right now and do several Biopsy's to know for sure. This option is out, and I will not be doing this.

4. Open to other ideas, please let me know if you have any.

 

I am not trying to be rude. I am just trying to figure out how to deal with this. Like I said, my wife and I plan on having a few kids and this is going to be really tough.

 

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Ennis-TX Grand Master
Ennis-TX
Posted

Sure it is tough at first but once you get a hang of it it gets pretty easy. As I mentioned before your catching it before you body is damaged to the point of developing other allergies or intolerance. You can still have all those foods, but just have to buy a gluten-free brand version of them. Blessed you are in this respect, as I can not do this as I developed other issues. But go check out the brands Ian's foods, Udi's, Van's you will find gluten-free options for all your fast foods, fried foods, etc that your used to eating every day. Your just changing to a safe brand name over the gluten versions. There are several specialty gluten free pizza companies, I know I saw at least 5 at the last gluten-free Expo I attended, None where safe for me due to olive, and yeast issues. But the reviews from others stated they were great. Small switch there, changing over a few other things like spices, teas, and beverages, its is very simple just change the brand switch at your current stage. You will probably even follow some of our suggestions later on once you settle down and start cooking as a family.  This gets really rewarding creating all kinds of gluten-free recipes to try out as a family activity. I have become a damn good cook, I am creating new recipes everyday some fails, glorious. Even started a bit of a following for some of my stuff.

If you need suggestions on sauces, condiments, canned goods, substitutions, where to find stuff, etc. You can ask in the forums and get some great responses. I have a bunch of simple recipes I can share also. Most are a tad odd....and cater to a certain palette. But I also have worked as a personal chef long enough to have plenty of other options and meal ideas.

I will admit it is your choice, but while your villi might heal in 3-5 years of strict gluten free. Any hidden brain/nerve damage would take decades to heal, and again this is progressive disease that does not simply go away. And your always chancing you could hit a rutt and suddenly develop a random allergy or intolerance. The corn, olive, and peanut one really snuck up on me. Just one day I started getting sick again, food elimination diet and testing showed I had just up and developed a issues to them just like that not been able to eat them for years.

I know your currently trying to come to terms with this and have a bit a denial "OMFG is this really possible to have a issue with wheat!?" thing. I had the same things, lol my hard ships and stubbornness and the fact I was adopted in a to family that ate the stuff daily. But alas I thought I was dying and cut it out then did a whole bunch of research. Said screw it tried it again for the testing.....yeah omg that. Everything returned 2x worse and I accepted I had this. Just give it time, and be lucky there is more information, food options, support groups, etc. then what I had trying to solo my issues.

I will PM you some references, to places to get foods, recipes, and links to a few other stories on the forums. Showing you options, giving you hope and allowing you to see some things from another perspective.

kareng Grand Master
kareng
Posted
3 hours ago, casuallythere said:

 

 

 

 

1. Go 100% gluten free for several years, never cheat, and let my body and stomach lining, to heal my " villi". I am prepared to do this and in fact have already done so. I have gone 100% gluten free for about a month now and feel amazing.

2. After 2-3 years of strict gluten free, re-introduce extremely small amounts of gluten in my system after my villi has 100% recovered. I know that everyone on here disagrees with this including a Clinical Doctor for Celiac which posted her comment here:

Open Original Shared Link

I was am on the end.

My Dad has done this and he is fine. No one has given me a concrete reason on why not to do this. I do not see how going off gluten and restoring your "villi" to 100% and letting your system rest, you can re-introduce a little bit of gluten. I need a lot more help understanding this part. To me its like smoking or drinking alcohol, ofcourse you can do damage to your body, people know it all the time, right on the box says, causes cancer, people still do it like weirdo's right? Well I guess call me a weirdo, I don't think I will become a gluten alcoholic and drink to the point of hurting myself. There is nothing wrong with a drink or two here and there.

 

 

And this is the reason for my "theory".  You have been given links to facts about Celiac.  You say you have read up on Celiac, yet you still want to argue with us that it is OK to heal and then go back on gluten.  Do we know your Dad has Celiac?  And if he does, how do we know he is really "fine"?  What is active Celiac doing to his bones?  His nerves? His intestines?  When will it catch up to him?  Will it be too late to reverse the osteoporosis or other damage?

 If I break my arm, it will heal.  Should I then try to break it again?  It will heal again.  But it probably won't be as good as before.  But it will heal again.... so....

casuallythere Explorer
casuallythere
Posted
8 minutes ago, kareng said:

And this is the reason for my "theory".  You have been given links to facts about Celiac.  You say you have read up on Celiac, yet you still want to argue with us that it is OK to heal and then go back on gluten.  Do we know your Dad has Celiac?  And if he does, how do we know he is really "fine"?  What is active Celiac doing to his bones?  His nerves? His intestines?  When will it catch up to him?  Will it be too late to reverse the osteoporosis or other damage?

 If I break my arm, it will heal.  Should I then try to break it again?  It will heal again.  But it probably won't be as good as before.  But it will heal again.... so....

I do not want to make you angry, but I just don't see where it says you cannot cheat at all. I think that is up to the individual and how they feel. I will re-read the official sites again on gluten.

But just like anything else. Everywhere it says do not drink, do not smoke, do not do drugs but people do it anyway. You all hear the stories, my grandfather smoke and drank all the way till he was 90 and then died. While other people smoke and die at 60-70. I think it all depends on how people's body reacts to things and the chance you are willing to take.

Call it a hunch, but I feel if I go 100% gluten free for 2-4 years, and then have like breaded chicken, breaded fish, or a pie with gluten crust. Once in a blue moon, I do not think I will get any extra diseases or activated celiac disease. However, if I had stayed on Gluten full steam ahead like the freight train that I was on. Eating tons and tons of pizza, bread, wheat pasta, and dealing with my IBS. I am sure I would have eventually been right where my Dad is.

Because also explain this. My Dad also eat 500 times more bread and gluten than I did to where he was on the floor screaming in pain, but he didn't develop anything else like some of the other people with Celiac did. What does that mean? People react different. Its up to you if you want to take the chance or not. He is gluten free now and doesn't have any other problems, and he is in his late 50's.

...

Please give me links and articles to where it says that if you go 100% gluten free, if you have tiny bits of gluten back into your diet, you will die, get sick, or develop a massive disease. I will then give those links to my Dad and we will discuss them. 

casuallythere Explorer
casuallythere
Posted

Update!

Someone mentioned on another forum about "Silent Celiac" this is exactly what I was needing in order to complete my research. Here is a great article about it.

Open Original Shared Link

Please read this if you are on the fence, but this is exactly what I was trying to say.

Of course, he recommends to stay on a gluten free diet however, he says in the end its a Gamble. Its up to you. You could eat gluten once or twice a month and never get cancer, or develop something worse or you could. However, this is life, you could get cancer at any time, or get hit by a car, or smoke and get cancer or not. 

I agree with everyone, be as safe as possible, however everyone's risk tolerance is different, and I think people should respect that. If I want to increase my risk a little I should be able to do that without being criticized.

However I really appreciate everyone's help! Thank you!

casuallythere Explorer
casuallythere
Posted
7 hours ago, kareng said:

And this is the reason for my "theory".  You have been given links to facts about Celiac.  You say you have read up on Celiac, yet you still want to argue with us that it is OK to heal and then go back on gluten.  Do we know your Dad has Celiac?  And if he does, how do we know he is really "fine"?  What is active Celiac doing to his bones?  His nerves? His intestines?  When will it catch up to him?  Will it be too late to reverse the osteoporosis or other damage?

 If I break my arm, it will heal.  Should I then try to break it again?  It will heal again.  But it probably won't be as good as before.  But it will heal again.... so....

Thank you for all of your help.

Getting close to my last questions...

Now that I am going 100% gluten free, how do I keep my grain diet in check. I was reading in this article that some people can feel tired. I think I have even felt this a little. Because they are not getting their balance diet of grains.

Open Original Shared Link

Is there a grain that is safe? What can you buy that you can eat to replace that nutrition that you can no longer it?

casuallythere Explorer
casuallythere
Posted

Check this article out:

Open Original Shared Link

Gliadin Tests for Celiac Disease
The first antibodies to gliadin that were used for celiac disease testing are called antigliadin, or AG, antibodies, which are available in both IgA and IgG forms. Most diagnostic laboratories run AG tests for both types of antibodies.

More recently, researchers found that the body makes IgA and IgG antibodies to a form of gliadin called deamidated gliadin peptide, or DGP. Some laboratories are starting to test for these antibodies, too. These new DGP tests seem to be more accurate than the older generation of AG tests.

In adults, AG antibody tests are no longer recommended, as they are not very likely to correctly predict the findings of intestinal biopsies, with both false negative and false positive results. AG tests are reported to be elevated in quite a few other conditions, including Crohn’s disease, small intestinal bacterial overgrowth, food intolerances (including gluten sensitivity without celiac disease) and irritable bowel syndrome. AG tests may even be elevated in healthy individuals.

The DGP antibodies seem to be more accurate than the AG tests, with fewer false positive results than the TTG IgA test. However, at this time, the DGP antibodies are not routinely available for clinical use.

Note:

What this tells me is exactly what I thought. You can not be diagnosed with Celiac without a Biopsy. Also Like I said if you read the whole article you have to be deficient in your levels for you to have Celiac, not increased and ramped up like mine. My body is still fighting and trying. Not sure for how much longer but I can try to help relieve the stress of fighting asap!

Let me know what you think!

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casuallythere Explorer
casuallythere
Posted

Also ... For whoever else might be wondering ...

Open Original Shared Link

  • Total Open Original Shared Link Some people have low total IgA. If you are deficient in Total IgA, the other tests involving IgA are invalidated.
  • tTG IgA (Anti-tissue Transglutaminase) This is very strongly correlated with celiac disease, however, some people with diseases such as Type 1 Diabetes, Hashimoto’s thyroiditis, HIV, and autoimmune liver conditions can have a Open Original Shared Link. Those conditions all have a higher incidence in celiacs, though, so there is a chance you may have both conditions.
  • EMA IgA (Anti-endomysial Antibody) This test is Open Original Shared Link. If these levels are elevated it’s celiac! However, this test is not as sensitive as tTg IgA
  • AGA IgA (Antigliadin IgA antibodies) Positive results indicate intolerance, and potential for celiac. Is being repaced by DGP IgA
  • AGA IgG (Antigliadin IgG antibodies) Positive results indicate intolerance, and potential for celiac. This may be positive in people with low Total IgA.
  • DGP (anti-Deamidated Gliadin Peptide) IgA This is a newer test. It is more specific to celiac disease than the tTG and AGA tests, and can Open Original Shared Link
  • DGP (anti-Deamidated Gliadin Peptide) IgG This is a newer test, replacing AGA IgG

This is what I was wanting. To know exactly how to read my results. You have to get a Biopsy to know for sure like everyone was saying.

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      Ocd making gluten fears unmanageable. Need advice

      By knitty kitty · Posted

      Hello, @Dora77, I agree with you that your doctors aren't very knowledgeable about Celiac Disease.  My doctors didn't recognize nutritional deficiencies either.  I became very deficient in vitamins before I was diagnosed, so having experienced similar, I understand what a difficult time you're having.   Poor absorption of essential nutrients is caused by the damage done to the intestines by Celiac Disease.  The gluten free diet can be low in essential nutrients, so supplementing to boost your absorption is beneficial.  New symptoms can develop or worsen as one becomes more and more deficient.   There's eight essential B vitamins that our bodies cannot make, so they must come from our food and supplements.  These eight B vitamins work together, like instruments in an orchestra.  They need to be supplemented together with essential minerals like magnesium.   Deficiencies in the B vitamins can have overlapping symptoms.  Some symptoms can be traced to specific B vitamins.  OCD can be traced to low Pyridoxine Vitamin B 6.  Yes, I had OCD and washed my hands until my skin cracked and bled.  ADHD symptoms can be traced to low Thiamine Vitamin B 1.  ADHD is something one is born with.  People who are born with ADHD have a metabolic problem with getting sufficient thiamine into their brain cells.  People who develop symptoms of ADHD later in life are more likely to be low in Thiamine.  The same symptoms appear if one is not getting sufficient thiamine from the diet.  Yes, I developed symptoms of ADHD.  These symptoms improved and disappeared after supplementing with Thiamine and the other essential nutrients. I was diagnosed with Type Two Diabetes.  99% of diabetics of both types are deficient in Thiamine because our kidneys don't re-absorb thiamine properly.  Thiamine is needed to make insulin and digestive enzymes in the pancreas.  Poor digestion (floating, undigested stools) can result with insufficient pancreatic enzymes.  The gall bladder (upper right quadrant) needs thiamine to make and release bile which also helps with digestion.  Constipation is also a symptom of Thiamine and magnesium deficiencies.  The thyroid is another organ that uses lots of Thiamine, too.  Low thyroid hormones can be due to insufficient thiamine, selenium, iron, and iodine.  Swelling of hands, face and feet are also symptoms of thiamine insufficiency.   Our bodies use thiamine to make energy so organs and tissues can function.  Thiamine cannot be stored longer than three weeks.  If our stores are not replenished every day, we can run out of Thiamine quickly.  If we do get some thiamine from our diet, symptoms can wax and wane mysteriously, because a twenty percent increase in dietary thiamine causes an eighty percent improvement in brain function and symptoms.  Thiamine interacts with all the other vitamins in some way.  Many other vitamins and their metabolic processes won't work without thiamine.  In Celiac Disease you are apt to be low in all the essential nutrients, not just thiamine, but thiamine deficiency symptoms may appear first. Talk to your dietician about eating a nutritionally dense gluten free diet.  Keep in mind that processed gluten free foods do not contain sufficient vitamins to be useful.  Processed gluten free foods are filled with saturated fats and excess fiber (that could explain your constipation).  Dairy products, milk and cheese can cause problems because Casein, the protein in dairy, causes the same autoimmune reaction that gluten does in some.  Your current restricted diet is dangerous to your health.  I followed the Autoimmune Protocol Diet (Dr. Sarah Ballantyne).  It's a Paleo diet that promotes intestinal healing.   Discuss with your doctors about correcting nutritional deficiencies as soon as possible.   Interesting reading... https://pubmed.ncbi.nlm.nih.gov/34165060/ https://pubmed.ncbi.nlm.nih.gov/21816221/#:~:text=Lipid-soluble thiamin precursors can,and attention deficit%2Fhyperactivity disorder.
    • max it
      Hi Ya All, Dr. just. Told me I have one celiac marker. I have been taking multiple blood test for thin Dr for years. Why couldn’t he have mentioned this! Anyway my functional med practitioner

      By max it · Posted

      I'll get to it. TY
    • cristiana
      Chest pain from celiac

      By cristiana · Posted

      My chest pain has been caused by costochondritis, as well as times when iron supplements has given me such bad bloating it has put pressure on my back and chest, and reflux can do the same. Also, along the lines of Wheatwacked's suggestion above, is it possible you had an injury to your chest/ribs way back that is being set off by either some sort of gastrointestinal bloating/discomfort? I distinctly remember really hurting a rib over forty years ago when I misjudged a wall and thought it was just behind me but in fact it wasn't.  I fell badly against the wall and I think I cracked a rib then.  For some strange reason I didn't tell anyone but I think had I gone to hospital an X-ray would have revealed a fracture. I think that rib has not been right since and I am sure that bloating makes it worse, as well as heavy lifting.
    • Dora77
      Ocd making gluten fears unmanageable. Need advice

      By Dora77 · Posted

      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.
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