New Member Just Venting

[J3C]

Hi... I just joined. I have not been officially diagnosed (no way I'm having any intestinal biopsy or deliberately inducing further reactions) but I'm certain I have celiac.  I figured this out pretty much on my own from history and symptoms and about 3 months of night and day Googling.  To every question, the search results invariably lead me here.  So I guess joining was inevitable.

 

Although I'm learning that I've probably had this for years, it seemed like it came on very suddenly.  I started breaking out in what I thought were hives (dermatitis herpetiformis?) in the summer of 2013.  Over a few weeks, I (thought I) traced these to foods containing oils like sunflower, safflower, canola, etc.  Eliminating those got rid of the "hives" from the abdomen, but was not the whole story.

 

In Dec 2013 (around xmas when food was everywhere) my eyelids swelled up and got scaly patches in the corners.  This was very like my mother, who had had "psoriasis" (or maybe not in retrospect?) on her eyelids, scalp, elbows, and ears.  Two dermatologists said it was eczema, gave me different creams, and wrote me off.  But the swelling eventually got so bad it was choking off the tear ducts and by late January, I had a case of dry eye so bad it was interfering with my vision.  I was on 3 Rx eye drops, with a steam humidifier in every room, and lying with my eyes closed for several hours a day.  (Sjogrens' Syndrome? - not something any doctor suggested including ophthal.)

 

Simultaneously, my lips became "chapped" so badly and deeply they were cracking.  No amount of lip balm got rid of it.  No amount of dermatological cream or ointment calmed it.  And no doctor had any explanation for it.

 

Still thinking my symptoms were allergies (I've been asthmatic since age 9 - allergic to many things) I eliminated all oils except olive oil, preservatives, dyes, nuts, shell fish, everything that had any allergic reputation.  I had eliminated corn years ago (mid 1990's) when the GMO corn and corn-by-products that had recently flooded the market were giving me rashes (long story for another forum).  This crisis was following a similar pattern, and for a minute I wondered if it could be other GMO crops, and went strictly non-GMO.  When dairy and other seemingly innocuous foods started making me sick, it got scary.  Finally, every single thing I ate, in fact every TIME I ate, I was having some kind of reaction... it was like it I was no longer trying to identify a certain food or ingredient, it was the very act of eating that was making me sick.  At that point I had been to the GP repeatedly and getting nowhere, was scared enough to go to a naturopath. 

 

She was great.  She never said the words "celiac disease" or "leaky gut", but her Rxs were all things you do for these two conditions:  No wheat, no soy, little to no dairy, and a slew of supplements, half of which I took, and half of which I returned because they were derived from pork and beef.  I don't eat red meat.   

 

I followed her advice for a couple of weeks, and was greatly improved.  However, I had also developed gynecological and other unmentionable symptoms that drove me crazy enough to go to a GYN who diagnosed and prescribed for lychen sclerosus!  She wanted to see me in two weeks for a biopsy.  That was the last straw. 

 

I started Googling night and day, and one thing led to another and another and another, and a picture of celiac started coming together.  All these symptoms, the "hives", the eyes, the lips, the GYN symptoms, the gastric symptoms, all fit the picture.  The only thing I don't have is weight loss and hair loss. 

 

I had my GP test me for celiac, and the test was negative.  However, I've read that is not reliable.  Definitive results can be had only by biopsy or a stool sample sent to some lab out west.  But you have to still be on gluten for it to give a true result.  And I'm not doing either.  The evidence I have is good enough for me.

 

I eliminated gluten, and like a charm, I resolved 90-95% of my symptoms.  I have 3-4 psoriasis-like spots on my hands that persist, but that is all and they are healing.... IF I never make any mistakes.

 

However, doing this DIY is hard, and I'm making mistakes all the time.  Too many times, I've made what I thought were perfectly healthy meals, only to have a dramatic reaction and have to go Googling about some food product or other.  For instance watermelon.  Who knew?  Only after I had a bad reaction to this and went Googling, did I learn fruit sugars are out while the villi are healing.  Next mistake was cauliflower.  I made a beautiful, (I thought) healthy meal, and had a massive attack the next day.  Googled: Can I eat cauliflower if I have celiac disease? Ans: (on your website) NO!  It's goiterogenic (whatever that is?!)  OMG.  I bought a small pack of nuts with dates and raisins one day when I got hungry outside.  Of course, bad reaction within a couple hours.  It had oat flour.  I didn't have my glasses with me and failed to read the label.

 

So, LSS, I can truthfully say, although I have been working at this for a few months now, I've only been 100% gluten-free for about 2 weeks.  And the list of temporary no-nos is long, disheartening, and grows all the time, usually after I've made a mistake and learned the hard way.  I've got to the point I don't eat anything until I Google it first.  Usually I find the answer here in the discussion boards, so it was a no-brainer that I should join.

 

I'm going tomorrow to a dentist 2 hours away that specializes in safe removal of mercury amalgam fillings to get that toxic dump out of my mouth.  Maybe that will help.  I had a tooth pulled last week that was an old root canal that had failed.  I have heard these things can create or complicate celiac and other diseases.  Whatever it takes.

 

LSS, I'm tired, frustrated, disgusted and HUNGRY!  I sometimes end up not eating until after 11PM at night because it's so damn much work.  I honestly don't know how I'm going to do this for the rest of my life.  And I wish my poor mother were still alive to benefit from what I have discovered.... after years of suffering and running to every doctor, she died without knowing:  It was probably celiac disease.  Poor thing.

 

Any advice for a new DIY celiac is appreciated.  Thanks in advance for all help, sorry for the long story, I sympathize with what you all have gone through, and thank goodness you are here.  

 

J3C

 

[kareng]

I'm not really sure what your mean that you can't have fruit or cauliflower? With Celiac disease you can't have gluten that is found in wheat, rye and barley. Oats need to be certified gluten-free.

Some people find that dairy is hard to digest for the first few months. And there are many adults in the world, with or without Celiac, that cannot digest some milk products ( lactose intolerance). You may find that the harder to digest foods like beans, spicy, uncooked veggies, etc are hard to digest for a few months.

Personally, I only eliminated gluten. I don't drink milk but continued with cheeses and yogurts ( many are low lactose).

I don't know if cauliflower causes goiters, but that is a thyroid issue.

[J3C]

I'm not really sure what your mean that you can't have fruit or cauliflower? With Celiac disease you can't have gluten that is found in wheat, rye and barley. Oats need to be certified gluten-free.

Some people find that dairy is hard to digest for the first few months. And there are many adults in the world, with or without Celiac, that cannot digest some milk products ( lactose intolerance). You may find that the harder to digest foods like beans, spicy, uncooked veggies, etc are hard to digest for a few months.

Personally, I only eliminated gluten. I don't drink milk but continued with cheeses and yogurts ( many are low lactose).

I don't know if cauliflower causes goiters, but that is a thyroid issue.

Many foods are apparently difficult or impossible to digest while the villi are healing.  Fruit sugars, lactose and some veg trigger bad symptoms.  Experience has taught me the hard way this is true.

[Gemini]

Many foods which contain no gluten can cause reactions in someone new to the diet and in need of healing.  Cauliflower is not a problem for the thyroid if the vegetable is cooked.  Cooking diminishes the goitrogenic affect of vegetables.  How do I know this?  I have Hashi's thyroid disease and eat many cruciferous veggies with no issues at all.  I steam them but still eat them somewhat firm...al dente.  My thyroid is stable.  Cutting out nutritious veggies is not advisable, unless you have a true allergy to them.

 

I also have Sjogren's Syndrome and have benefited well from the use of Restasis eye drops, which are a Rx.  I would advise getting the blood work done for Sjogren's.  Keep in mind that it is like the blood work for Celiac.....you can have it and test negative. Anitbody testing can be a crap shoot, for various reasons.  The testing for Celiac is reliable but if you are Iga deficient, then you cannot use blood work as a test method.  Any Celiac testing should be in the form of a full panel for reliability.  Stool testing does not diagnose celiac or anything else gluten related, regardless of what someone on the internet says.

 

As for removing amalgam fillings.....I did that too and it made absolutely zero difference to anything health related.  I did not have that many fillings so it was not a big deal for me but that is another health myth that has grown legs with the internet.  I would say save yourself the money and don't bother. The only way you are going to get better is buy a reputable book on celiac and learn all you can so you won't be making mistakes.  It should be written by a celiac doctor and not anyone else claiming to know all about the gluten-free diet and celiac because they usually don't know anything.  Ones that come to mind........Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler.  Another good one: Celiac Disease: A Hidden Epidemic by Dr. Peter Green.  These are the people to trust with information on Celiac!

 

Good luck and hope you feel better soon!

[kareng]

What I am trying to say is - there is no gluten/Celiac reason for not eating cauliflower or fruit.  Celiacs can eat them.  When you are first healing, you may find a lot of things are hard to digest.  That does not mean that other Celiacs cannot eat them.  And you may find that you have a problem or allergy to a food that is separate from Celiac disease.  It can be frustrating and a bit of trial and error and experimenting over time.  Might even help to have good detecting skills.  Open Original Shared Link

[dilettantesteph]

It is possible to have a problem with oats.  Some celiacs also have avenin intolerance because the protein in oats, avenin, has a similar structure to gluten in wheat, barley and rye.  Open Original Shared Link

 

I am as over reactive as they come and even I agree that cauliflower and watermelon should be fine.  I also agree with Gemini about mercury amalgams.  I've got a mouth full of them.  Here is a start on reading on the mercury amalgams are safe side of the argument: Open Original Shared Link

 

It is easy to overeact when it seems like everything is making you sick.  It can be really hard to figure out.  Don't give up on doctors.  They can help.  I wish you the best, J3C.

[nvsmom]

Welcome to the board. 

 

You could always try celiac disease testing.  There is a (small) chance that you would still have high autoantibody levels after being gluten-free, especially if you have not been 100% gluten-free (meaning frequent accidents, if that applies to you). In some people the autoantibody levels can stay high for quites some time, especially the tTG IgA and tTG IgG.  The EMA IgA, DGP IgA and DGP IgG tend to go down a bit faster.

 

When googling for answers, use our discussion board as a springboard into better research. We make mistakes on here, so don't take everything we say as fact. Do more gogling but use medical websites to find the harder facts, or medical journal articles.  The cauliflower is one example, that usually is only a problem for some people with Hashimotos (which 10-15% of celiacs have) but I have Hashi's and still eat it... when I have to.  LOL

 

What I mean is that we have many members here and in such a large group you will find many issues that may or may not be related to celiac disease, but not everyone has all of those issues. Some around here have issues with strawberries, others with soy or high histamine foods.  Three is a lot a variation.

 

Dairy is a good one to look out for though. About 50% of celiacs, when they first go gluten-free, are lactose intolerant because the villi which makes the enzyme lactase, has been damaged.  Many regain the ability to consume dairy after 6 months or a year or two.

 

A food and symptom journal is a good idea when you are dealing with multiple sensitivities like you are.  It might help you see patterns a little bit better.

 

My main advce would be to hang in there.  About 70% of celiacs START to notice improvements after two weeks on the diet, and that's just a start. It can take months to years before you truly feel well.  I have been gluten-free for 2 years and I still have some issues that I am dealing with. It takes a long time. Hang in there.

 

ps.  As a favour, could you not use the small or different fonts?  I have poor eyesight, and I was tired yesterday so my jittery eyes could not focus on the fonts. Thanks 

[J3C]

What I am trying to say is - there is no gluten/Celiac reason for not eating cauliflower or fruit.  Celiacs can eat them.  When you are first healing, you may find a lot of things are hard to digest.  That does not mean that other Celiacs cannot eat them.  And you may find that you have a problem or allergy to a food that is separate from Celiac disease.  It can be frustrating and a bit of trial and error and experimenting over time.  Might even help to have good detecting skills.  Open Original Shared Link

 

What I am trying to say is - there is no gluten/Celiac reason for not eating cauliflower or fruit.  Celiacs can eat them.  When you are first healing, you may find a lot of things are hard to digest.  That does not mean that other Celiacs cannot eat them.  And you may find that you have a problem or allergy to a food that is separate from Celiac disease.  It can be frustrating and a bit of trial and error and experimenting over time.  Might even help to have good detecting skills.  Open Original Shared Link

I wasn’t speaking about other celiacs when I mentioned these.  Just me.  I guess I am following the typical pattern in that I react to almost everything during this initial period.  That includes almost all fruits, dairy, natural sugars, and strangely cauliflower.  This was not something I decided to avoid based on research, it was personal experience that I then Googled and found other celiacs (on this forum actually) had similar experience.  

 

I'd say my detecting skills are pretty good.  Better than my doctor's that's for sure.  And his lab.  He said I tested negative for everything including everything in the allergy panel.  I told him he had the wrong blood and almost hung up on him, because no one reacts to more substances than me.  And this will be the second major health crisis in my life that I've had to figure out almost completely on my own.   Ironically, both are cured by diet alone.  I guess if there were a $500 pill for it, he'd be more help.

[J3C]

Many foods which contain no gluten can cause reactions in someone new to the diet and in need of healing.  Cauliflower is not a problem for the thyroid if the vegetable is cooked.  Cooking diminishes the goitrogenic affect of vegetables.  How do I know this?  I have Hashi's thyroid disease and eat many cruciferous veggies with no issues at all.  I steam them but still eat them somewhat firm...al dente.  My thyroid is stable.  Cutting out nutritious veggies is not advisable, unless you have a true allergy to them.

 

I also have Sjogren's Syndrome and have benefited well from the use of Restasis eye drops, which are a Rx.  I would advise getting the blood work done for Sjogren's.  Keep in mind that it is like the blood work for Celiac.....you can have it and test negative. Anitbody testing can be a crap shoot, for various reasons.  The testing for Celiac is reliable but if you are Iga deficient, then you cannot use blood work as a test method.  Any Celiac testing should be in the form of a full panel for reliability.  Stool testing does not diagnose celiac or anything else gluten related, regardless of what someone on the internet says.

 

As for removing amalgam fillings.....I did that too and it made absolutely zero difference to anything health related.  I did not have that many fillings so it was not a big deal for me but that is another health myth that has grown legs with the internet.  I would say save yourself the money and don't bother. The only way you are going to get better is buy a reputable book on celiac and learn all you can so you won't be making mistakes.  It should be written by a celiac doctor and not anyone else claiming to know all about the gluten-free diet and celiac because they usually don't know anything.  Ones that come to mind........Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler.  Another good one: Celiac Disease: A Hidden Epidemic by Dr. Peter Green.  These are the people to trust with information on Celiac!

 

Good luck and hope you feel better soon!

Thanks for the feedback.  However, I have disagree on the mercury amalgam issue.  I don’t believe for one second that recovering health after removing them is an internet myth.  I’ve seen at least two friends recover from strange illnesses after removing their amalgams, and I have been slowly, as the teeth fail, over time, replacing amalgams with other materials, and have watched my asthma symptoms improve with each filling I had removed.  I just regret that I waited too long with the last 3.  By the time I had them removed last week, I could actually taste the metal in my mouth.  I got them out and would never have another.  Many countries now ban the use of amalgam completely because the dangers are real and substantial.  Not only can you have mercury poisoning from amalgam fillings, you can have something called oral galvanism - an electrical disturbance created by having disparate metals in your mouth.  If removal did nothing for you, it’s possible your fillings were not leaking or not old enough to begin breaking down.  Also, removing the fillings only elminates the source of the leak.  It can’t remove mercury that is already lodged in tissues.  You need high doses of vitamins, and taken in a very precise regimen, to do that.  Also the amalgam needs to be removed by a dentist that employs safe removal practices so amalgam is not sprayed through the air with every drilling, and he makes sure he gets everything out.   A dentist who is just humoring you may not take care to get everything out. 

[J3C]

Welcome to the board. 

 

You could always try celiac disease testing.  There is a (small) chance that you would still have high autoantibody levels after being gluten-free, especially if you have not been 100% gluten-free (meaning frequent accidents, if that applies to you). In some people the autoantibody levels can stay high for quites some time, especially the tTG IgA and tTG IgG.  The EMA IgA, DGP IgA and DGP IgG tend to go down a bit faster.

 

When googling for answers, use our discussion board as a springboard into better research. We make mistakes on here, so don't take everything we say as fact. Do more gogling but use medical websites to find the harder facts, or medical journal articles.  The cauliflower is one example, that usually is only a problem for some people with Hashimotos (which 10-15% of celiacs have) but I have Hashi's and still eat it... when I have to.  LOL

 

What I mean is that we have many members here and in such a large group you will find many issues that may or may not be related to celiac disease, but not everyone has all of those issues. Some around here have issues with strawberries, others with soy or high histamine foods.  Three is a lot a variation.

 

Dairy is a good one to look out for though. About 50% of celiacs, when they first go gluten-free, are lactose intolerant because the villi which makes the enzyme lactase, has been damaged.  Many regain the ability to consume dairy after 6 months or a year or two.

 

A food and symptom journal is a good idea when you are dealing with multiple sensitivities like you are.  It might help you see patterns a little bit better.

 

My main advce would be to hang in there.  About 70% of celiacs START to notice improvements after two weeks on the diet, and that's just a start. It can take months to years before you truly feel well.  I have been gluten-free for 2 years and I still have some issues that I am dealing with. It takes a long time. Hang in there.

 

ps.  As a favour, could you not use the small or different fonts?  I have poor eyesight, and I was tired yesterday so my jittery eyes could not focus on the fonts. Thanks 

Thanks for the welcome.  Yes, I did start a food journal, and yes, I would only use these discussion groups as a reference.  But I have to say, I’ve found more answers here than on any medical site so far where they’re just quoting text books.  Thanks for the tip on lactose/lactase.  I find I’m as symptomatic with dairy as gluten now.  Good to know I may be able to eat dairy again someday.  But right now it’s very frustrating.  Sorry for the small type. 

[J3C]

Many foods which contain no gluten can cause reactions in someone new to the diet and in need of healing.  Cauliflower is not a problem for the thyroid if the vegetable is cooked.  Cooking diminishes the goitrogenic affect of vegetables.  How do I know this?  I have Hashi's thyroid disease and eat many cruciferous veggies with no issues at all.  I steam them but still eat them somewhat firm...al dente.  My thyroid is stable.  Cutting out nutritious veggies is not advisable, unless you have a true allergy to them.

 

I also have Sjogren's Syndrome and have benefited well from the use of Restasis eye drops, which are a Rx.  I would advise getting the blood work done for Sjogren's.  Keep in mind that it is like the blood work for Celiac.....you can have it and test negative. Anitbody testing can be a crap shoot, for various reasons.  The testing for Celiac is reliable but if you are Iga deficient, then you cannot use blood work as a test method.  Any Celiac testing should be in the form of a full panel for reliability.  Stool testing does not diagnose celiac or anything else gluten related, regardless of what someone on the internet says.

 

As for removing amalgam fillings.....I did that too and it made absolutely zero difference to anything health related.  I did not have that many fillings so it was not a big deal for me but that is another health myth that has grown legs with the internet.  I would say save yourself the money and don't bother. The only way you are going to get better is buy a reputable book on celiac and learn all you can so you won't be making mistakes.  It should be written by a celiac doctor and not anyone else claiming to know all about the gluten-free diet and celiac because they usually don't know anything.  Ones that come to mind........Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler.  Another good one: Celiac Disease: A Hidden Epidemic by Dr. Peter Green.  These are the people to trust with information on Celiac!

 

Good luck and hope you feel better soon!

Oh, meant to also say, thanks for the well wishes and the book references.  With regard to stool testing, there is a test available through Enterolabs that uses stool to test for celiac.  Are you saying that's unreliable?  They also have a DNA panel that tests for the gene that predisposes to celiac.  Blood work has already come back negative for me.  Which is ridiculous.  I have every symptom.

[Gemini]

Yes, you cannot diagnose Celiac via stool testing. It is not a recognized test. However, the gene testing might be worthwhile as that is solid science and if you do carry a celiac gene, it means you have the predisposition to develop celiac. Many people use it to bolster a diagnosis....or to help in figuring out if they do have it. I did gene testing but I had already been diagnosed via the blood panel. Found out I had a double gene which means it's on both sides of my family. Many of my relatives have symptoms and associated conditions but choose not to be tested. I guess they like being sick. If you do have the gene, a doctor might take you more seriously. There is a very small percentage of people who do not have the gene and may still have celiac but those numbers are small.

I did use Enterolab for the gene testing but many other labs also offer it to. It is not that expensive and DNA testing has come a long way.

You can also do gene testing to see what ethnic background you are so it's a science that is used many ways today.

[SMRI]

Oh, meant to also say, thanks for the well wishes and the book references.  With regard to stool testing, there is a test available through Enterolabs that uses stool to test for celiac.  Are you saying that's unreliable?  They also have a DNA panel that tests for the gene that predisposes to celiac.  Blood work has already come back negative for me.  Which is ridiculous.  I have every symptom.

 

There are 300 symptoms associated with Celiac, if you have all 300 of them, I would be suspect.  The problem is, there are other conditions that can cause the major symptoms as well, thus the testing.

[J3C]

There are 300 symptoms associated with Celiac, if you have all 300 of them, I would be suspect.  The problem is, there are other conditions that can cause the major symptoms as well, thus the testing.

Would you know where to direct me for a list of all the symptoms?  I'd like to see that.  Thanks in advance. 

[SMRI]

Open Original Shared Link

[J3C]

Would you know where to direct me for a list of all the symptoms?  I'd like to see that.  Thanks in advance. 

Thank you.  Well, you're right, I don't have 300, but I have 63.  On my way to GI doc tomorrow.  This list will help.

[millerb68]

I understand the watermelon and cauliflower thing, as they are high in Open Original Shared Link, short-chain carbohydrates that are difficult for some people (me) to digest. See this chart and it will make more sense: Open Original Shared Link. Wheat and rye are high in one of the FODMAPs, so it's conceivable that people with celiac could also have intolerances to other foods high in FODMAPs.  

 

Also, you may have leaky gut as a result of the celiac disease, which can cause a lot of issues with foods.