Confused and a bit whiny tbh

[lunasea]

Hi everyone! I'm obviously new to the forums, but I'm also new to the idea of celiac/gluten free/etc.  Lemme give you the Cliff Notes version of my journey:

1992: I'm diagnosed with CFS/ME. It sucks and I'm tired and sick all the time.

2014: I'm still tired and sick all the time, so I decide to become a vegetarian. Maybe that'll help, right? I began getting deathly ill when I ate. Vomiting and diarrhea, everything I eat seems to be a problem.  I go to a doctor who runs a million tests. Nothing turns up. In among those tests is a celiac panel which has this result: no antibody detected and no serological evidence of celiac disease. No cause is ever found. I continue to suffer.

Later in 2014: I notice that my stomach issues are triggered every time I eat a raw vegetable. I can eat bread or pasta no problem. Fake chicken? Great. Have a salad? I'm dying. This is a problem, as I'm a vegetarian. I nix the fresh veggies and continue to live my life.

2015: I'm diagnosed with Fibromyalgia. I realize that the problem with vegetables is worse than I thought. I can no longer eat cooked spinach, can't have lettuce on my sandwich, and stealing a single slice of cucumber set my stomach on edge for days. I'm becoming hypersensitive to veggies in food and protecting myself from their evil influence; my stomach thanks me.

2017: After a relative peaceful period, the stomach issues are back, worse. So I go to a new doctor (I've moved) and he recommends a colonoscopy and EGD (no labs). This was done yesterday. The full results will of course have to wait for the biopsies to be examined, but apparently there is scalloping "through the entire duodenum".  Doc told my partner that he believes I have celiac and discharged me with orders to go gluten free.

Now I'm sitting here alternately considering drinking alone in the dark and throwing things--I guess I'm wavering between the stages of depression and anger on my trip through grief for my lost favorite foods.

But here's where the confusion comes in...everything I'm seeing says that I should give up bread and eat more veggies, but veggies make me sick. Does anyone else have this reaction to vegetables?

Meanwhile I'm thinking back to the labs done in 2014 and wondering if its possible to have a negative test and still be positive for celiac?

Also, what actually happens if you DON'T go gluten free?

[Ennis-TX]

Well, as a celiac the gluten causes your own body to flare with antibodies and mistakenly attack your body most people the intestines. (I also have it attack my entire nervous system and brain) Your antibodies can stay flared for weeks to a month or so with just a crumb, so cheating is not a option. The damage to your intestines will cause malabsorption for one, second the damage leads to food intolerance issues random allergies, the more damage and longer you go the narrower your list of foods you body can put up with will normally get, These can go away as you heal by the way in most cases, they will also come and go. I had the lettuce intolerance crop up for a month or two. I still have a whole list of NO foods you can check my profile to keep it simple. This disease if untreated can lead to other autoimmune disease, cancer, lymphoma, and we had a case were one member ignored the diet and had to get a emergency colostomy and a section of their intestines removed.

Side thoughts, my body works best with fresh cooked veggies to the point of being mushy, I also find taking digestive enzymes makes it so I do not vomit. I take 2-3x times the dose on the enzymes and it works great. (Jarrow Vegetarian Enzymes Plus, and Papaya Super Enzymes, I take extra bromine when using vegan protein powder shakes.)

As you heal there will be some wonderful options open up in the gluten free processed foods department, you will probably lose some of those veggie food intolerance issues after a year or so normally. I have lost a few myself and enjoy some I used to not be able to eat. I will give you the newbie 101 list and a list of potential food alternatives that might give you some hope to browse through.
https://www.celiac.com/forums/topic/91878-newbie-info-101/

https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

 

I also post some great recipes in the recipe section.

[lunasea]

Good morning, Ennis, and thank you for taking the time to respond to my post. 

Looks like just ignoring this is out of the question *grin* -- but seriously, thank you for letting me know what could actually happen. I'd searched but everything I was coming across was vague warnings of "bad things."

Your post actually makes me wonder if perhaps some of the other issues I've had along my journey could possibly fall on celiac. I've had a lot of tremors (arm, leg, trunk) and balance issues, and at one point even had to walk with a cane. I've still got neuropathy in my arms and legs and was, after extensive testing at Mayo Jacksonville, diagnosed with a 'functional disorder' - in other words, they have no idea what causes it, but they suspected it to be psychological.

I spent quite a bit of time browsing the 101 and going through the links; the kids and I just compiled our first gluten-free menu plan for the week. Interestingly enough, it didn't take too much to alter what we're already eating...I think I was cutting a lot of the "bad" foods out by instinct alone at this point.

Thanks again!

[Ennis-TX]

9 minutes ago, lunasea said:

Good morning, Ennis, and thank you for taking the time to respond to my post. 

Looks like just ignoring this is out of the question *grin* -- but seriously, thank you for letting me know what could actually happen. I'd searched but everything I was coming across was vague warnings of "bad things."

Your post actually makes me wonder if perhaps some of the other issues I've had along my journey could possibly fall on celiac. I've had a lot of tremors (arm, leg, trunk) and balance issues, and at one point even had to walk with a cane. I've still got neuropathy in my arms and legs and was, after extensive testing at Mayo Jacksonville, diagnosed with a 'functional disorder' - in other words, they have no idea what causes it, but they suspected it to be psychological.

I spent quite a bit of time browsing the 101 and going through the links; the kids and I just compiled our first gluten-free menu plan for the week. Interestingly enough, it didn't take too much to alter what we're already eating...I think I was cutting a lot of the "bad" foods out by instinct alone at this point.

Thanks again!

Yes, gluten ataxia is one form where it effects your brain and nervous system. I lose feelings in my hands and feet, have all kinds of muscle issues when even traces get introduced via CC or walking through the bakery section of the grocery store -_ - Last time I got glutened at a restaurant back in 2016 I got home and lost full motor control and collapsed on the floor and started vomiting unable to move my body.

Your veggie issues made me think of a few other things. I can not eat those veggies in the produce section, they put some kind of veggie wax on them that makes me vomit no matter what, makes a waxy film in my stomach and they float.....I have to buy farmers market fresh, or canned no salt (del monte canned no salt spinach is my number 1 vitamin a and k staple in omelettes) Other members have issues with glyphosate and have to have organic produce that is not treated on the farm with these chemicals. Some members develop histamine response issues so foods are limited by histamine number and how they are prepared. Just a few things to consider.

UPDATE I suggest supplementation to deal with those nerve issues. Celiac causes issues with b-vitamins, magnesium and a bunch of others. So supplementation works wonders. Here are my suggestions

Liquid Health Stress & Energy + Liquid Health Neurological Support 1 tbsp each 3 times a day in a beverage like tea.]

Either Doctors Best Magnesium or Natural Vitality Calm. If you have constipation issues calm is suggested. Note start off small dose like 1/4 tsp slowly raise the dose to the full amount. Some of use need more or less, depending on activity levels etc.
 

Liquid Health Vitamin D drops might be needed, some of use have issues with this also.
 

We suggest starting off eating whole foods only, dropping dairy and oats (some of us react to oats just like gluten). You can try introducing processed gluten free foods later.

[lunasea]

3 minutes ago, Ennis_TX said:

Yes, gluten ataxia is one form where it effects your brain and nervous system. I lose feelings in my hands and feet, have all kinds of muscle issues

This has been my life for the past three years! Oh man! I have had every muscle and nerve test known to man and...nothing. The doctors finally stopped trying and just referred me for cognitive behavior therapy. 

I'm still confused about the negative blood test though?

[Ennis-TX]

5 minutes ago, lunasea said:

This has been my life for the past three years! Oh man! I have had every muscle and nerve test known to man and...nothing. The doctors finally stopped trying and just referred me for cognitive behavior therapy. 

I'm still confused about the negative blood test though?

Sometimes this happens, odd as it might be, you have to be eating gluten for the test first off daily. We call it a gluten challenge. Second some people due test negative on the blood test but can have celiac which is why we consider the endoscope and biopsy the golden standard. Also the gluten test back when you had it done previously was much less accurate then it is now days or at least it seems.  Do you have your numbers? We have had many cases where the doctor said it was negative...and the idiot could obviously not read the test cause when member posted their lab forms we can see it obviously positive. What ever the case we know what the issue is now and your on your way to getting better. Unlike most AI disease we know the cure and fix for celiac is a strict gluten free diet. So you can now begin you road to healing......and yeah I know that feeling of finding out the nerve issues....sadly nerve damage is VERY slow to heal unlike gut damage. But it has it's odd messed up benefits, I have most coordination back but it comes and goes in waves. Funny thing, I can grab stuff out of the oven or burn myself and the reaction to it delayed or non existent pain wise. So they do not bother me. I can cut my hand and go "oh look I should super glue that back together" without the pain, I just logically deal with it and do not have much panic or pain unless it is VERY deep.

[cyclinglady]

Hi!  Some celiacs (10%) are seronegative (if CDis suspected, a GI will proceed to endoscopy).  Also, not all doctors order the complete celiac panel.  This might have occurred with you back in 2014.  

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I would not recommend having your kids go gluten free with you until you have had them tested.   I maintain a gluten-free household, but I make sure my kid gets gluten in her lunch daily while at school.  Because I have celiac disease, she is tested every few years for celiac disease even if symptom free.  

You should get copies of your files and lab results.  Consider a second opinion if you are doubting your diagnosis.  You will know more when your pathologist's report arrives.  

Not able to eat veggies?  A damaged gut can have a hard time processing any type of food.  Raw veggies or fruit can be hard to digest for anyone, let alone a person with active celiac disease.  Cook those foods.  Able to eat wheat?  That was me.  I had few GI issues (anemia) yet I had some pretty severe damage.   Still can not digest those cooked veggies?  Celiacs can have additional intolerances (e.g. Sulfites, lactose, etc.)  Some resolve with healing (e.g. Lactose), but others continue.  For example, I can not eat garlic, onion or leeks still after four years of being gluten free.  We are all different and we can develop different intolerances.  Learn more (world leading celiac disease researcher) about leaky gut due to Zonulin which celiac tend to have too much:

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Long term damage?  Lymphoma, malnourishment, osteoporosis, triggering other autoimmune diseases.  Depression and anxiety are very common with celiac disease.  There are over 200 symptoms that can be attributed to celiac disease.  

Hang in there.  Learn the gluten-free diet.  You will soon figure it all out.  

[lunasea]

Thanks for the reply! I never thought about the damage to my system causing the problem with eating other foods - excellent point. Really gives me a lot to think about.

With regard to my boys, don't fret for them =) They both eat two meals outside the house Monday through Friday, and of course being 15 and 20 have their own snacks, etc. (the 20 year old even has his own mini-fridge in his room.)

Dinner is our only shared meal and they don't mind eating gluten free.

 

[cyclinglady]

2 hours ago, lunasea said:

Thanks for the reply! I never thought about the damage to my system causing the problem with eating other foods - excellent point. Really gives me a lot to think about.

With regard to my boys, don't fret for them =) They both eat two meals outside the house Monday through Friday, and of course being 15 and 20 have their own snacks, etc. (the 20 year old even has his own mini-fridge in his room.)

Dinner is our only shared meal and they don't mind eating gluten free.

 

I am not worried about them eating gluten free.   If you want to test them for celiac disease, they must be on a diet containing gluten daily for 8 to 12 weeks.  

[Ennis-TX]

The point is, celiac is mostly genetic, it can be dormant for years then come up. You can have it with no symptoms for years as it slowly eats away at your insides also. So you should have your kids eating gluten and get them tested. This way you know if they have active celiac. They should also be tested every year or so as there is a high chance they will get it.

[lunasea]

Wow. I'm quite surprised that this is so highly heritable.

I mean, I knew there was a genetic component, but most things I've read have said that it isn't very well understood and that other factors play a part. 

This gives me a lot to think about.

[cyclinglady]

Here is more information about testing family members.

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