Recently Diagnosed and Family Issues

[WheatlessAdventures]

Hi all, 

I just signed up for this forum because I am newly diagnosed. I thought I was "gluten-sensitive" so have been avoiding gluten since September, but am now as careful as I can possibly be. I try to avoid gluten like the plague, obviously. 

I was in my cousin's wedding recently (who is also gluten-free) and was told that all the food I was eating at both the rehearsal dinner and the wedding itself was safe. I have now been very sick since the rehearsal dinner, more sick than I have been since not eating gluten. I asked my cousin about it, and she has been sort of sick too (she's not celiac, just gluten-sensitive). I found out her dad, my uncle (who made lasagna for the rehearsal dinner), doesn't "believe" in gluten-free/celiac and joked to her about using wheat noodles to see if anyone would even notice. 

I'm upset about so many things - 1)That anyone would do that, especially my own family, 2)That my cousin didn't tell me about this conversation and give me the choice to not eat anything at the dinner, and 3)That people think celiac is something to not be believed.

I was just wanting to reach out to see if anyone else has experienced anything like this. Also, any suggestions for healing myself. I'm severely fatigued with headaches and cracks in the corners of my mouth, severe stomach pains and bloating (especially after eating anything), and horrible depression. 

Thanks!

[Gemini]

When it comes to food related health issues, families can be the worst.  You are not alone and many of us have had clashes with family over Celiac and all that goes with eating safely.

I was the first one diagnosed in my large family and everyone pretty much ignored my advice on getting tested.  It has been 14 years for me and things are only marginally better with the attitude.  My mother has come around and supports my choices, whereas before she was testy about it all.  However, I have other relatives who have been diagnosed and some of them do not take the diet seriously.  They go out to eat all the time and eat foods that are on the forbidden list because, as they put it, it does not bother their stomachs.  So, I am the enemy because I follow the diet as it should be followed and I do not cheat.  People get very emotional over food and may resent those who do all they can to be healthy.  I still get crap from them because I have learned that no wedding food is safe. When there are large crowds of people being fed, they rarely get it right.

This is something you will have to find your way in dealing with.  Stay strong and do not let anyone bully you regarding your food choices.  Not always easy but with time, their ignorance will not annoy you as much.  If someone is out of line, I always say something back, whether they like it or not.  I am never rude but kill them with kindness and politely point out where they are wrong!   ?

As far as healing, it a time thing.  I would suggest taking digestive enzymes because that does help with the bloating and pain.  https://enzymedica.com/  These are the ones I used in my early Celiac days.  Not cheap but they helped me tremendously.  Take one with every meal.  You may have to avoid dairy also in the beginning because digestion of milk products is compromised from gut damage but once healed, many people can go back to consuming dairy.  All of your symptoms should decrease over time, as you heal.  It is different for everyone.  Eat simple foods and cook veggies well so you can digest them more easily.  Baked potatoes always went down well with me.  Get plenty of rest too.  You will heal but it might take a bit longer than you like.  I was a mess when I was diagnosed.  92 pounds and my gut was trashed.  But I have healed well and now enjoy foods I could never eat before.  Read the Newbie section on the forum for all kinds of good advice for the newly diagnosed.  Best of luck to you and I hope you feel better soon!

[notme]

lolz - the wedding thing - for reals!  my daughter and I both have celiac.  we were at my niece's wedding and I KNOW the food people were properly questioned but they forgot to tell the servers which dishes were safe to eat and which were not.  I ended up educating one of the wait staff (crash course and she also went one step further and googled celiac lolz) and she was our personal vetter of finger foods that she brought around to us.  that was fine.  the dinner itself was fine.  the buffet, (cheeses, antipasta, crudite all at different stations) however, not so fine.  I made my best effort to pick from what looked untouched, but I figured I was gonna get hit.  my daughter saw what I was eating and asked me if it was safe.  I said probably not but today i'm gonna try it.  she also had some from the different stations.  felt okayyyyyyyyyyyyy…….

til the next day - we were both down for the count.  so, what gem said:  don't trust weddings.  I call the bride my niece but she is actually my bff's daughter, also an rn, they both quizzed the venue and caterers I know this because they always try their best to do right by us.  sadly, some people (like the caterers) do not understand all it takes is a couple of crumbs or 'just a little' wheat to make us sick.

insult to injury:  I had a gastro appointment a week after we returned home, I described the event of illness of both my daughter and I and he deemed it as 'food poisoning'  i had to bite my tongue and get tf out of his office:  what about the other 150 people that ate the same food...………….. 

ugh.  it will get better as it becomes your new normal.  I, like gem, was the first celiac diagnosed in my family, but they are now jumping on the celiac wagon - they're sick of treating the symptoms.  

you're gonna feel awesome!!  take heart!!  welcome to the forum 

[Ennis-TX]

Well most my extended family wants nothing to do with me anymore, I am adopted so no genetic relations. My parents were semi supportive, as in they tried to help me as long as they could still eat it in the same house back then and issues ensued to say the least til I made my own safe house to live in dedicated gluten free.

Over the years I have come to learn not to trust anyone but a fellow celiac to understand gluten free, and not get anything with ANY chance of gluten eating out. (Few places I trust to do 1 dish and one other place that has 2 celiac daughters and a dedicated Gluten free kitchen).

For the most part, I do my own cooking, started baking and selling at farmers markets and moved to cooking for others, market food vending and catering to provide safe gluten free food to others.  I have heard plenty of horror stories of gluten free catering from celiacs, and people doing catering, BTW I think what he did falls under Food Tampering if I recall that is punishable by 10-20 years in prison.

[knitty kitty]

"Also, any suggestions for healing myself. I'm severely fatigued with headaches and cracks in the corners of my mouth, severe stomach pains and bloating (especially after eating anything), and horrible depression. "

WheatlessAdventures, welcome to the forum!

Many newly diagnosed Celiacs have vitamin and mineral deficiencies.  Talk to your doctor, dietitian, or nutritionist about being checked for deficiencies and about supplementation. Common deficiencies include B12, iron, magnesium, and Vitamin D.

Cracks at the corners of your mouth are called angular cheilitis and are often caused by deficiencies in some of the eight  B vitamins (thiamine, riboflavin, niacin and cobalamin).  Here's a link to an informative article, but it's not written for the gluten free so be alert....

 https://www.livestrong.com/article/409132-the-vitamin-deficiency-that-causes-the-corners-of-the-mouth-to-crack/

Migraines can be caused by deficiencies in the B vitamins pyridoxine, folate and cobalamin.  

Fatigue can be caused by a deficiency in B12 (cobalamin), folate and iron.  B12 deficiency is also a cause of depression.

Your intestinal tract needs niacin (B3) to heal so it can digest properly without pain and bloating. Another form of niacin, tryptophan, is used to make that "feel good" brain chemical serotonin which lifts that depression. Neurotransmitters like serotonin are made in your intestinal tract. 

Vitamin D (and the other fat soluble vitamins A, E, and K) are often low in Celiacs because we have difficulty absorbing fats.  Low Vitamin D can be a cause of depression, too.

I recommend following the Autoimmune Paleo Protocol diet (AIP diet).  I found the book "The Paleo Approach" by Dr. Sarah Ballantyne extremely helpful.  The AIP diet has been scientifically proven to promote healing.  It's basically meat and veggies, no grains, no legumes, no nightshades (tomatoes, potatoes, eggplants and peppers).  

Keeping a food journal can help you identify problematic foods, especially after you've healed and can try expanding your diet.  

Ditto what the others have said about eating out.  Eat before you go to a function or bring your own food.  

And DO Visit the forum often to keep us posted on your progress and for support and understanding.  Like Ennis said, only another Celiac can truly understand gluten free.  

Wishing you all the best on your journey! 

 

 

 

 

 

 

 

 

[knitty kitty]

And no dairy

[WheatlessAdventures]

Thanks to everyone! It's nice chatting with people who understand and have empathy.

I looked into the AIP diet, and I'm going to start it tonight! It seems...restrictive, but I'm going to look at it as a way to make me feel better instead of what I can't eat. Thank you for the tip, knitty kitty! And thanks for the info on supplements. I take a lot of those supplements already but I think I'm having malabsorption issues. I eat and then I feel hungry about 15 minutes later, it's awful! Is that normal?

Thanks to everyone for responding. I feel so welcome here already.

[Ennis-TX]

1 hour ago, WheatlessAdventures said:

Thanks to everyone! It's nice chatting with people who understand and have empathy.

I looked into the AIP diet, and I'm going to start it tonight! It seems...restrictive, but I'm going to look at it as a way to make me feel better instead of what I can't eat. Thank you for the tip, knitty kitty! And thanks for the info on supplements. I take a lot of those supplements already but I think I'm having malabsorption issues. I eat and then I feel hungry about 15 minutes later, it's awful! Is that normal?

Thanks to everyone for responding. I feel so welcome here already.

Yep...I spent years with the binge eats, I still get it sometimes but since I changed to full paleo with Keto Macros it is not as bad. Just odd cravings sometimes.

Digestive enzymes can help you get more nutrients from the food you eat, look at taking them to the macros you eat, RealZymes makes different formulas depending on your diet.
|
To this day I still take many supplements but probably 1/2 as much as I used to years ago, seems I need less to feel the benefits after healing. I like to think of a damaged gut as trying to fill a bucket with holes in it, your not going to absorb all you need.



 

[Iiv]

OT

Isn't that a felony? As in causing bodily injury or illness. (sry, but what a ******* ***. I'd be so pissed) 

 

"Assault Causing Bodily Injury or Mental Illness

Any assault as previously defined which results in a bodily injury.  Bodily injury is defined as physical pain, illness, or any impairment of physical condition.  Assault causing bodily injury or mental illness is a serious misdemeanor; punishment includes imposition of a fine ranging from $315 to $1,875 and/or imprisonment for up to one year. " http://www.grllaw.com/criminal-defense-division/charges-offenses/assaults/default.aspx

Previously defined" 

1. By committing an act intended to cause pain or injury to another coupled with the apparent ability to do it;"

[knitty kitty]

On 7/17/2019 at 12:08 PM, WheatlessAdventures said:

Thanks to everyone! It's nice chatting with people who understand and have empathy.

I looked into the AIP diet, and I'm going to start it tonight! It seems...restrictive, but I'm going to look at it as a way to make me feel better instead of what I can't eat. Thank you for the tip, knitty kitty! And thanks for the info on supplements. I take a lot of those supplements already but I think I'm having malabsorption issues. I eat and then I feel hungry about 15 minutes later, it's awful! Is that normal?

Thanks to everyone for responding. I feel so welcome here already.

WheatlessAdventures, 

So happy to be of help! 

Yes, the AIP diet does seem to be a bit restrictive, but I adopted the mantra "eat to live, not live to eat" and reminded myself often I was healing on the inside.  I couldn't see it but I could feel it.  

I found eating small frequent meals the norm at first.  As you heal, you'll absorb more nutrients and time between meals will get longer.  I found it helpful to keep posted on the fridge ideas for meals and snacks.  I often made crock pot soups, bone broth, or stews to have at the ready.

In addition to a B-complex, I also supplemented low doses of some individual B vitamins (niacin and thiamine) with every meal.   The B vitamins all work together, so be sure to take a B-Complex even if you take additional individual B vitamins.  B vitamins are water soluble, so any excess is excreted in urine. 

Don't forget to take vitamin C! I take an elderberry gummy containing vitamin C and zinc.  And to help with sleep, take magnesium, B6, and tryptophan.  Take calcium at a different time than magnesium as they compete for absorption.  As for iron, I actually like to eat liver, but a desiccated liver supplement works better for me than a constipating iron supplement.  

And healthy fats are important for the brain and contain those important fat soluble vitamins A, D, E and K.  I'm in favor of having a high vitamin D level, so vitamin D supplements are a must for me.  

I know it's a lot of information to take in, but you'll get the hang of it.  A food journal really helps.  And so does this forum!  It's been a guiding light for me and I hope it will be for you, too.

Best wishes! 

[Posterboy]

WheatlessAdventures,

Knitty Kitty has given you good advice....as she always does.  We emphasis B-Vitamin(s) I think because we know how they helped us.

B-Vitamins helps us more than most people realize....they act as co-enzymes in the body driving our metabolic pathways...without B-Vitamins to guide these pathways....the car...our  health runs off the road.

https://www.livestrong.com/article/291313-vitamins-that-function-as-coenzymes/

I like all the B-Vitamins ...but I have a fondness for Niacin ... B-12, Folic Acid, Thiamine and lately B-2 Riboflavin ....because they all helped my health in some way.

I had your angular chelitis once upon a time....

B-Vitamins do best work as a complex but if you know which one to take and/or how they are connected you can focus on fewer of them.

B-Vitamins have to be converted to their co-enzyme form before the body can use them.

https://vitanetonline.com/forums/1/Thread/1285

So I recommend a Enzymic B-Vitamin these days ...because it takes one less hurdle away.

The B Vitamin that helped my Angular Chelitis (leaky lips) was Riboflavin aka B-2.

Here is a great overview of it's (Riboflavins') role in creaked, and  chapped lips.

https://www.sciencedirect.com/topics/medicine-and-dentistry/riboflavin-deficiency

I will quote from the section on the problem of Malnutrition and B-Vitamins and how B-2 can cause Cheilosis and glossitis. quoting

MALNUTRITION | The Problem of Malnutrition

K.K. Sinha, in Encyclopedia of Food Sciences and Nutrition (Second Edition), 2003

Cheilosis and glossitis

"These are riboflavin-deficiency diseases (ariboflavinosis) that are common in persons who consume a marginal diet devoid of dairy products or other animal protein sources and leafy vegetables.

Cheilosis is characterized by the appearance of crack at the corners of the lips as well as bifurcation at certain points. Sometimes, blood also oozes out at those points. In the case of glossitis, small pimple-like eruptions arise on the tongue that become red and sometimes inflamed.

These diseases are treated by administration of riboflavin coupled with an improvement in the diet. Riboflavin supplementation should continue at the rate of 5–10 mg daily until complete recovery. A well-balanced diet rich in milk and milk products, meats, and leafy vegetables should accompany the specific vitamin therapy."

It is me again...we usually don't think of a Vitamin causing complex diseases but it is because Vitamins are not studied nearly as much these days as they used to be ....now doctor's study medicine's instead.

But Beri Beri, Scurvy, Pellagra, Ricketts, Pernicious Anemia, Anemia etc. are all one Vitamin/Mineral/Nutrient that effect whole body systems when we get low in them...

And why supplementing with B-Vitamins can help Celiac's who have developed Malnutrition issues.

I hope this is helpful but it is not medical advise.

Posterboy,

[WheatlessAdventures]

I've been doing the AIP diet since it was recommended to me - so a few days. It's going well! It definitely takes meal prep, but I found some great recipes and made a bunch of food and put it in the freezer for breakfast and lunches, which helps a lot. I am definitely craving things...sweets mostly. I've been dealing with a bit of constipation with it, which I read is normal. Any recommendations from anyone who has experience that on that diet?

The good news is that I feel SO MUCH BETTER! Night and day. It's remarkable, really. Almost all of my symptoms have gone away. I am still kind of fatigued, but not as much as I was. I can tell I'm absorbing nutrients better already because I'm not as hungry as I was, my headaches are going away, and the cracks in my mouth have disappeared.

It's also hard to exercise on this diet (which makes sense) so it's hard to get used to a different level of activity than I'm used to. I notice I get worn out really easily.

But anyway, thanks again for the recommendation to do the AIP diet. It has really helped me so much. And thanks for all the advice from everyone else - I really appreciate it!

[knitty kitty]

Yeah, WheatlessAdventures!

I'm so happy you're feeling better on the AIP diet!  So happy, in fact, I'm putting down my knitting and dancing! Won't you join me?

Knitty Kitty