mslee

Say what??? This is the simplest diet! No complicated grainy foodlike substances to worry about. Just plain veggies, fruits, meats, eggs, nuts, honey, yogurt, cheese, oil and spices. What could be easier?

and rinne "I agree. Too complicated for who? What orientation does this dietitian have?"

I know!!! and unless she knows nothing of SCD/GAPS she would see by my food diary I send her every 2 weeks I am basically already on it. But she should know something of this diet because she is the head dietitian at a major hospital...you know where sick people go for help.

sigh.

She is nice & has been somewhat helpful seems that she tries & I appreciate it but...now what? She is the only one who said I may have Hyperglycemia by the sounds of my symptoms & that is something I have asked countless Doctors about & am pretty much told they don't know why I have those symptoms..."could be the fibromyalgia, could be the lupus, maybe your just depressed?"

sigh again.

Good vent! thanks!

Hi MsLee. Welcome to the thread.

The GAPS diet is the SCD in essence.

I think you need to take things a bit more gently. A damaged gut cannot cope with too much to start with. Dairy is difficult for a lot as damaged villi cannot produce the lactase needed for its digestion.

It is best to start at the beginning and work through - even though there are a lot of 'legal' foods on the diet, some of them may still cause issues to start with. I have been on the diet for 10 months and although there is a lot more I can eat now, I still have problems digesting some foods like pork and occasionally nuts and have only recently been able to tolerate a little dairy. Some get better quicker (especially if they are very disciplined on the diet) and others slower but there are very few who don't improve in some way on the diet.

Thanks! I had been dairy free for 6 months so thought I would give it a try...it really was just a few bites but I learned my lesson. Dairy really has not been as hard as I thought it would be...it even tastes a little icky now.

Pork is supposed to be high in histamines that could be an issue too. As for nuts, they just dont seem to digest fully...same with some veggies.

I think I need to look into balancing enzymes & acid....

and give this time

One thing I have noticed with the chicken soup is that I have to make sure the chicken is organic otherwise I find that boiling the bones for the soup seems to draw things out that affect me - both me and my hubby get a lot of mucous for an hour or two after eating chicken soup if it wasn't organic although the freshly roasted meat seems fine.

Organic everything is better (and home-grown better still!) if you are able to get hold of it and can afford it.

Ok will try, I eat as much organic as possible...going into debt doing it but I'm sick of being sick!

Candida and Leaky gut may well be a problem but as you heal that should improve. When I started there was little I could eat, but my diet is a lot broader now.

I asked my GI if I had leaky gut, he said "he didn't think so" but I did have some gastritis.

I know candida is an issue.

Thanks again!

I'm bumping this because GFLisa seemed to have all the symptoms I have been dealing with.

First anyone involved in this thread have any updates?

Ok so month 7 gluten free, but all my life have had dizziness & it seems worse now that I am gluten free. It is definitely blood sugar related, I was down to corn & white rice as my only grains & even they bother me. Sometimes in my sleep, I wake up from dead sleep thinking "need sugar" go to the kitchen in the middle of the night half asleep and eat anything I can get my hands on...usually something sweet.

My Great Grandpa died of Diabetes...but it was the less common type...guess I should find that out.

I have asked several Doctors if it's possible that I have diabetes or ????

~my GI "For now lets focus on the celiac, it can cause all kinds of strange symptoms"

~my dietitian "well if you had diabetes you GI would have caught it, there might be a chance you have hyperglycemia"....BUT she just told me NOT to try SCD.

~my internist ...well I may have become "the crazy hypochondriac patent that wont leave her alone" so we just delt with the B12 deficiency, guess I could go back.

I will be seeing a Rheumatologist soon guess I can bring it up to him.

SO what now,

If it is Hypo or Hyper glycemia....sounds like I'm on my own, getting a Dx for that may be a waist of time ...I should read up on the glycemic index diet

To test for Diabetes don't they have to hold you and keep testing your blood sugar though out the day???

I don't know...will use this thread as a resource, I'm just overwhelmed & unsure of what to do next.

Thanks for letting me vent

Thank You!

I am excited about this diet the food sounds so good! Muffins??? omg yum!

I pretty much went cold turkey gluten-free & grain free. no gluten-free grain goodies for me!

So good advice, be prepared & do the intro that should help with the intolerances I hope.

Have tried goat cheese & had a bad reaction ...just last week tried some glorious gobs of Brie cheese & that was really painful. Had read that is one of the safer cheeses for the GAPS diet but I bet I dove in WAY too soon.

So will try the intro.

Just need to be prepared.

A couple things, right now everything make me itchy especially this rash i get in my ears but mostly around my face & neck..when I cook the steam makes it worse...oil seems to make it worse, pork, dairy (if i make something for hubby), nuts, pepper (red & black)... and making broth from scratch a couple times that made me itchy & dizzy. Is that just part of all this, could it cadidia, or maybe just my body being very high in antibodies (new allergies)???

What about GAPS vs SCD any feelings about that?

Now how to break it to my dietician?

Thank you sooooo much!!!

Hi

I just wanted to add another vote for something in her diet still getting to her. Read up on the Behavior section https://www.celiac.com/gluten-free/index.php?showforum=52

Lots of us have a nasty streak if any gluten accidentally gets in our foods, grains could do the same I would imagine...they give me migraines & make me dizzy. Consider candida too, another issue with grain consumption. Still new to this & learning...but the grumpy symptom is very real. Some people are just drama queens, the combination can't be good.

good luck!

sweet of you to care!

just kinda jumping in...this is a long thread

I have been so overwhelmed I am on month 7 of the gluten free diet.

Months 1-3 I was sick as a dog & very weak, lost alot of weight

Months 4-6 I tried to pin point other problem foods because I was still reacting to everything, saw an allergist, saw a hospital dietitian, met with my GI...none are too familiar or believers in food intolerances. But I think it's an issue. I have different reactions to different foods, I kept a food/symptom diary...my Dietitian told me to go ahead & take a break with that, & do I need to see a counselor ? . Starting to feel pretty good with my diet & rotating safe foods.

Months 6-7 Holidays (yay) travel...glutened bad for the first time since gluten-free, just now recovering & starting to feel human again. I was going to SDC for my new years res. & I got boxes & boxes of gluten free granola, cookies, brownies. can't eat them...I know all gluten replacement flours so far make me feel sick...and today I got an e mail from my dietitian .... she would not recommend doing the SDC or GAPS diets right now because it might be too complicated.

Seemed almost there already the only grains I eat are tiny amounts of corn & white rice...& I know they are a problem. My ears itch, I get dizzy, want to eat more & more.

But off any food with ingredients that are man made chemicals, eating some simple processed foods like larabars, or 100% juice. BUT was worried because I can't do: Dairy, Soy, Coconut, Carrageen (sp?), and still not sure about nuts. No anaphylactic reaction but an intolerance maybe? (did have + allergy test to cashews, pecans & coconut)

So what do you guys think? With those food allergies/intolerances is SDC/GAPS doable? How would I get my probiotics? & I don't know what to do with the dietitians advice, she is mainstream medicine...I have dealt with mainstream medicine for 15 years & know they overlook things like candida. She says celiac is caused by autoimmune reaction to gluten, not caused by gut imbalance. (I am gluten free &...) Seems balancing the gut should be my goal at this point.

There's my rant, I just couldn't take anymore I'm trying so hard & still developing new intolerances...I don't know what to do.

Hi Guys

I have been gone a while dealing with life & lupus stuff. Just wanted to say Hello! and thank you for all the helpful info posted here!

I know it can start to weigh on ya, posting personal info online. I recently killed my myspace ...only to move in & update my care2...it's a little addictive!

Learning to adjust to this diet, going strict SCD very soon...so maybe see ya over in that thread

Rachel, thanks so much all the info about B12, vit. absorption, mercury/MCT has been very informative & helpful.

Also thanks all for info leading to understanding that grains are a major problem for me.

Thank So Much!!!!

Hope everyone is doing well & healing!

peace & good wishes

~a

also if your kids have tested positive, and you have symptoms there is a very good chance you are celiac too...you could just go Gluten Free.

..sounds like you have had you stomach looked over pretty good, they could do colonoscopy to make sure there is not colitis or anything caused by celiac...have they checked your liver, thyroid, ana, or for malnutrition to see if anything else is coming up suspicious? My liver & thyroid being off helped to lead to my dx, after dx they tested my vitamin levels & I was low in B12 & D. Some are low in Iron.

good luck!!!

Hi!

Your in my home town! I was recently dxed but in Texas so I am unsure about a good GI in San Diego but here is some info I have passed on to my family out there maybe some will be of help....

UCSD Has a Celiac research center:

Open Original Shared Link

San Diego has it's very own gluten free website:

Open Original Shared Link

This is another link for UCSD..Not sure if it is the same center

(this is the Dr listed at the bottom of the page... Dr. Greg Harmon at the Adult Celiac Center, call (619) 543-2347)

Open Original Shared Link

If you contact any of these groups they should be able to send you a list of Drs who know about celiac:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Wish I had a good name to give you, maybe someone in SD will get you a name. Another option is to have entrolab Open Original Shared Link or prometheus labs Open Original Shared Link do a genetic test...prometheus looks like it can only be ordered by a Dr. but they have forms you can print out for your Dr to fill out &they are in CA. Entrolab you can order yourself.

Also if you get D.H. blisters I have heard they can be biopsied & tested for celiac.

Hope that helps!

Good luck!

Hi Austin here,

I was dxed by Dr Stassen, but have heard Dr Lubin is the best when it comes to celiac. My Internist (primary) is Dr Theresa Pham, not that she specializes but she seems to understand celiac and is a good Dr.

This was sent to me from the local Celiac Group:

------------------------------------------------------------

AUSTIN PROVIDER

Wild Wood is probably your best bet, have not been there but have heard it's wonderful!

The only other gluten free bakery I know of is Open Original Shared Link they do cookies, Whole Foods may be able to special order you something they do gluten free baked goods.

Oh I just remembered this bakery from an old search Open Original Shared Link

congratulations! enjoy the craziness of wedding planning!

rumbles thanks for the info. something definitely worth looking into.

Ms SkinnyChic hang in there, at month 3 I was going nuts, my food still bothered me even though I was very careful, everything I ate still made me sick...not like gluten a little different but still sick. I weighed as much as I did at 13 & everyone was getting worried I would keep loosing.

I am dealing with low B12 & really feeling the symptoms, I made an apt to go get my first B12 shot this week. Not sure if P.A. could be my issue, looking into it but most likely was just celiac. My GI did say there was some gastritis, I should get those labs & look into parietal cells.

....Now on month 6 and gaining weight & feeling stronger.....

I did cut out dairy with Gluten as instructed by my GI because yes, as mentioned above villi are damaged & cannot produce the enzyme to digest dairy.

(I started to wonder if this could be true for other enzymes because sugars & oils can be a problem for me we are still working on figuring that out)

Soy, MSG, Carrageen were obvious problems.

From there I went to an allergist, I showed allergic reactions to milk, corn, rice, soy, pork,pecans,cashew,apricots, peaches,onion,cabbage, celery,coconut,mustard,salmon, oysters, nutmeg, giner, olive,cucumber, turkey...there were plenty I did not react to but as you can see that's alot of foods making my body produce antibodies. And thats what we need to avoid.

So by limiting /rotating/cutting out the foods that bother me this is really starting to feel under control. After holiday travel I'm going on the GAPS/SCD diet I think that will be key in balancing my system. For now got some good quality multivitamins, calcium/D, magnesium we will see if they help.

Hang in there give it some more time, look for other problem foods.

Mother of Jibrel

Hi!

Have you looked into the GAPS diet, it's dairy limited SCD you probably have...just thought I would mention it. I'm about to jump in but may wait until after holiday travel.

Open Original Shared Link

I cannot do casein either... or coconut that would have been a perfect dairy replacement

have a nice night!

Great Job! Thanks for organizing this!

I have been wanting to order some tests but $ is tight & am a little uneasy about jumping in just yet.

i will pm you my name

Many celiacs cannot tolerate dairy, there are 2 causes for problems:

1) when the villi are damaged the lactase enzymes needed to digest lactose are destroyed because they are found on the tips of the villi. as the villi heal they will be replaced but that takes time my GI Dr. estimates 6mo-1 year dairy free before trying to re introduce dairy.

2) the protein in dairy Casein is said to be so closely resemble gluten to a celiac's body that it triggers the gluten autoimmune response...mistaking dairy for gluten.

(This may not be common knowledge in the medical community...heck Celiac really is not....but seems to believed a cause of problems by some Dr's & Celiacs)

My Dr just said take dairy out with Gluten and we will try in in the future, I know testing it has made me sick. Also had a slight allergic reaction to milk during allergy testing.

Good Luck!!!

Juice is fine on SCD. You just have to confirm there is no added sugar.

oh good news! thought i was cheating...although have not officially started yet

guess we're doing pretty good when "junk food" becomes sweet potatoes and 100% juice

rachel, you just reminded me to go take my magnesium hope you feel better

thanks!

tabasco good luck with the job!

night night

Hi Guys

Just stopping in

ran across this article this morning, talks about austism in the pacific north west in relation to rain....could it be the mercury being washed out of the air? Just a thought....

Open Original Shared Link

Confused I have read that Red Wine, Purple Grape Juice, Garlic, and cayane can help thin the blood naturally. I can feel a difference if I drink 100% juice purple/concord grape juice or garlic sups. I guess the problem here is that juice is a no no for those on SCD and cayane is a nightshade. Just wanted tp pass the info along.

Rachel thanks for the info, there is so much cancer & autoimmune problems in my family I am sure I have some sort of genetic blip that can explain alot of the problems I have had. We are so lucky to live in a time where they are able to test our genes!

have a nice day all!

oh I see Rachel leaking gut is why you have food intolerances.

LOL so I went out and bought some beet t o do a test!

but now I see that test may not necessarily work. but beets are good anyways!

yes just trying to stick to a scd/gaps diet ...I can tell a difference when I cheat and drink juice or eat potatoes

thanks again! You guys have a great day!!!

sorry guys I have a hard time keeping up in this thread!

Carla I am so glad the treatments have helped you! Thank you for posting you blog, very exciting & interesting!

Rachel so glad you have some answers! So the genetic defects were the root of everything? Does that explain your food intolerances? Are you really living off of peas & beef? Gosh that must be hard. When I start to feel bad for myself about my diet I will remember poor Rachel living off of peas and beef!

About vaccines, I got a few right before all this Lupus & autoimmune stuff flared up. I did not know it at the time but they are starting to considered them a trigger for Lupus.

Also I went to a Lupus supprt group last night, a woman there was talking about how there are big break thoughs showing Vit D used to help treat Lupus. Have not researched this yet but she said there is alot of info online about it. Just thought that was interesting, they have not come up with a new medication for lupus in 50 years!

I will be out of town for a week, San Diego anyone???

so may pop in but will probably get behind again!

Have a great week everyone!!! Hope you have good days!!!

Hi Guys

I'm going out of town in 2 days and I don't know if I have a stomach flu or if this is gastritis.

Only 4 months into this gluten-free at time of endo/colo Dr found mild gastritis, had not felt these symptoms until a day or two ago. Def. feels like a bug today.

Any idea how dangerous is this for someone with pretty severe celiac & several autoimmune conditions? Viruses typically just need to run their course right? I am going home to see Mom, maybe she can take care of me

Doubt a trip to urgent care or my internist would be of much help....& I will be so busy these last couple days!!!

(will probably touch base with my interest or GI mon, good grief!)

I've been doing a little reading about leaky gut... there seems to be a fair amount of crazy, speculative information out there , but here are a few things I've learned that seem to make sense:

- There is a scientific test that can diagnose a leaky gut. It involves drinking a solution with two different kinds of sugar. One of them is NOT supposed to leave your intestines. So... if it shows up in a urine sample, you have a leaky gut. I think naturopathic doctors are generally willing to perform this.

- If every dark-colored food you eat comes out in your urine (beets=pink, kale=green... for my daughter, too many Cheetohs=orange) that's another sign of a leaky gut. The color is supposed to stay in your intestines.

- A leaky gut CAN make you sensitive to a lot of different foods. For one thing, it's allowing undigested particles to leak out into your bloodstream and (like you said) your body starts producing antigens. Also, if you have a leaky gut you might feel better if your intestines don't have to work so hard to process your food... that's the idea behind the SCD diet. I think that's why I can't eat corn right now. It's a really starchy food.

Well I have actually been eating, beets & lots of dark leafy greens..no change in urine color. Guess that is a good sign.

But to both Mother & Ali

I have been kinda basing my diet on the SCD/GAPS diets, I have this great list I think Nora posted

Open Original Shared Link

that has helped me feel like there is lots of good food I can eat, with so many limitations that's a good feeling!

I see a dietitian in a couple weeks until then I'm just using that list and trying to get enough calories in me every day. The allergy testing did help & I am trying be conscious of quantities and rotating foods.

at the time of my endo, my villi were basically gone so I guess there is a lot of damage to heal. I will be reading up on SCD & am on the waiting list at the library for the book.

Thank You for the info!!!

welcome welcome!

Just wanted to add since my dx my Mom is in the process of being dx'ed she is in her 50's and symptoms she has had her whole life are healing since going gluten free. It is a little scary at first but we will be so much healthier once we heal & that part is empowering & exciting!

Hi Utahlaura!

Just when I was starting to feel bad for myself cause I can't eat much I run across your post

gosh that must be hard, seafood is good occasionally but I don't know what I would do if I had to live on it!

For the first 2 months I couldn't tolerate any strong flavors or fats but I am finding I can tolerate some better now. Can def. digest animal fats now, others are a problem. I have kinda learned and narrowed it down to a couple spices I can use...like I react to onions, tarragon, basil and celery but can tolerate fresh garlic, cilantro & rosemary. Strange.

Nightshades are plants in the nightshade family: potatoes, tomatoes, peppers, eggplants etc.

They contain alkaloids.

For me I know eggplant is a problem, if potatoes are any variety but russet without the skin they bother me...green skins are the worse. It causes a sharp stingy feeling in my mouth, that just kinda makes me ache later.

It is sometimes recommended for those with joint & muscle pain (& lupus) to limit or avoid them. I cheat a little w/tomatoes and mild peppers because my diet is so limited as it is...but can tell a difference if I eat to much of them.

Nightshades are in the solonaceae family, some are deadly poison to us some are hallucinogenic (in a nasty way) :

Open Original Shared Link

*interesting horticultural fact* plants are grouped together in families based on the shape of their flower so all plants with the same shape of flower are in the same family regardless of if they are a annual or a tree. Example the Fabaceae family (aka Leguminosae) is the pea family... peas on a vine, beans, peanuts & mesquite trees are in the same family!

( I was a horticulturalist before I got sick, comes in handy now and then!)

I find this list helpful:

Open Original Shared Link

GAPS Diet is a dairy limited version of SCD

Also keep in mind the larger and longer living the fish you consume the higher levels of mercury it will contain.

Don't have mainstream shopping list, I cut out all processed food....thats gotta be hard, no fruit? no beef?

Hope you get to feeling better & have some luck with your diet!

~a

Hi!

You guys probably have been to the Celiac Foundation's website. I over looked it a couple times but there is a phone # on their homepage to call and get awareness pamphlets.... so I called today and requested some. Will be sharing them with the Lupus Foundation, my other Doctors, and family members. If you would like some just give them a call or print off the website.

Open Original Shared Link

"NEW! CDF presents our current celiac disease

Is this something most Dr.s look over look like...celiac, thyroid, lyme, malnutrition, fibro...etc

Or is it something they can obviously see during endoscope or test with a lab?

Just asking because when I asked my Doc if Leaky Gut was an issue he just said "I don't think so"

.....ok he's seen me inside and out if I had it he should know right?...I would hope.

What would be other reasons my body would react to almost every food I try to put in it?

I'm especially having alot of trouble with nuts & oils...olive, walnut, sunflower, etc

Are allergies the only other explanation?...or just plain intolerance???

Also I have heard both as a Celiac heals the allergies & intolerances can go away...but also that once a body recognizes an antigen it commits that antigen to memory and never forgets.

Confused!