MISERABLE on this magic eating plan

[BlackRaven135]

I am wheat, dairy and egg intolerant (#2 on a scale of 0 to 5) lesser problems with almonds 

and a few weird items, but no fruits, veggies, or meats, poultry, fish

I was NEVER as miserble as I am now in ((((((extreme bloating))))))), nausea HOURS after eating

Today I had a mixed green salad, tomatoes, Balela on top of the greens, a gluten free toritlla 

and an apple (1/2)

It is now HOURS later and still bloated like I ate 1/2 hour ago 

I am unable to even think of eating any dinner

I am about to give up.

I don't need this

I am also WORRIED about converting to oatmilk 

With use of the milk, since almond is out, what will happen in time, an intolerance to it also?

I am about to pull the plug

 

[knitty kitty]

@BlackRaven135,

Welcome to the forum!  You've been courageous to come look for help here.  Never give up!

Have you been diagnosed with Celiac Disease?  Sometimes a wheat intolerance is misdiagnosed as Celiac.   What brought about your decision to go gluten free?

I've found going on the AIP diet, the Autoimmune Protocol diet, has been most helpful to me.  It's been scientifically proven to promote healing and help abate the autoimmune response (calms your symptoms).  

The AIP diet cuts out most carbohydrates, like legumes and chickpeas, as well as corn and grains.  Dairy, eggs, and other common allergens are removed too.  

Basically eat fresh vegetables (plain frozen veggies without sauces or seasoning works, too), meats (nothing processed like sausages), and some fruits.

A diet high in carbohydrates like tortillas and garbanzo beans encourages Small Intestinal Bacterial Overgrowth (SIBO).  The AIP diet starves these bacteria out and beneficial bacteria can take their place.  Beneficial bacteria encourage gut health.  

You may want to start keeping a food journal so you can keep track of problematic foods.

Some Celiacs react to oats, so abstaining from them until your digestion improves would be beneficial.

Knitty Kitty

 

[BlackRaven135]

11 hours ago, knitty kitty said:

@BlackRaven135,

Welcome to the forum!  You've been courageous to come look for help here.  Never give up!

Have you been diagnosed with Celiac Disease?  Sometimes a wheat intolerance is misdiagnosed as Celiac.   What brought about your decision to go gluten free?

I've found going on the AIP diet, the Autoimmune Protocol diet, has been most helpful to me.  It's been scientifically proven to promote healing and help abate the autoimmune response (calms your symptoms).  

The AIP diet cuts out most carbohydrates, like legumes and chickpeas, as well as corn and grains.  Dairy, eggs, and other common allergens are removed too.  

Basically eat fresh vegetables (plain frozen veggies without sauces or seasoning works, too), meats (nothing processed like sausages), and some fruits.

A diet high in carbohydrates like tortillas and garbanzo beans encourages Small Intestinal Bacterial Overgrowth (SIBO).  The AIP diet starves these bacteria out and beneficial bacteria can take their place.  Beneficial bacteria encourage gut health.  

You may want to start keeping a food journal so you can keep track of problematic foods.

Some Celiacs react to oats, so abstaining from them until your digestion improves would be beneficial.

Knitty Kitty

 

YES, I have been tested for Celiac and I do not have that but wheat, dairy, including the casein, and eggs are worst culprit on food panel. . . all at 3 level out of 0 to 5 possible. Part of the testing was also the IgG part of it all. It also tested candida. Years ago I battled systemic and won but am glad it is not part of this nightmare

My decision to go gluten free was the wheat. I stopped dairy before I was even tested due to congestion and a number of other things happening. As a child I was intolerant so perhaps never grew out of it. Yogurt and cottage cheese worst for me.  Wheat I suspected, even though I had no overuse of it. I am not much of an egg user so little problem. 

My doctor did tell me out of all his patients I have the least reactions. I remember years ago I had a panel done and I had a high # of reactions and similar IgG and also candida was high.

I was much better by end of day with a dinner of vegetables and some steak. I gravitate to a basic diet of meat, fish, poultry, pork (loin mainly), beef, veggies and fruit than I do of a vegetarian diet even though I have been eating a mixed diet for the most part.

[Scott Adams]

I'm not sure how long you've been 100% gluten-free, but to me it sounds like you could have possible undiagnosed celiac disease and/or non-celiac gluten sensitivity. Many people with either condition have additional food intolerances which may go away after 1-3 years on a strict gluten-free diet. In the case of celiac disease, those additional intolerances are usually cased by the leaky gut condition, and go away after the gut heals.

[BlackRaven135]

1 hour ago, Scott Adams said:

I'm not sure how long you've been 100% gluten-free, but to me it sounds like you could have possible undiagnosed celiac disease and/or non-celiac gluten sensitivity. Many people with either condition have additional food intolerances which may go away after 1-3 years on a strict gluten-free diet. In the case of celiac disease, those additional intolerances are usually cased by the leaky gut condition, and go away after the gut heals.

I have been tested twice for it and have been checked for leaky gut and candida. NONE of that is what is happening.

What I was eating before NEVER caused me as much distress save for dairy, but my doctor felt I needed a food panel to see if I had food intolerance.

My doctor now believes it may be too much fiber, but am believing that perhaps I need to just do beef, fish, poultry, pork, vegetables, fruit, rice, nuts, seeds  (NONE of that is on the list) and leave all the rest out of my diet. I found out I can use chia and flax for additional fiber. 

 

I frankly don't need any of it given I am already dealing with panhypopit (lost my pituitary to a brain tumor) which presents a myriad of careful monitoring daily

[MADMOM]

On 4/27/2022 at 10:07 PM, BlackRaven135 said:

I am wheat, dairy and egg intolerant (#2 on a scale of 0 to 5) lesser problems with almonds 

and a few weird items, but no fruits, veggies, or meats, poultry, fish

I was NEVER as miserble as I am now in ((((((extreme bloating))))))), nausea HOURS after eating

Today I had a mixed green salad, tomatoes, Balela on top of the greens, a gluten free toritlla 

and an apple (1/2)

It is now HOURS later and still bloated like I ate 1/2 hour ago 

I am unable to even think of eating any dinner

I am about to give up.

I don't need this

I am also WORRIED about converting to oatmilk 

With use of the milk, since almond is out, what will happen in time, an intolerance to it also?

I am about to pull the plug

 

stay strong - have you tried probiotics?  i have been on this journey 15 months now and very careful about what i eat - this week i had some walnuts and almonds and came home bloated and uncomfortable - stabbing pain in my tummy - popped a probiotic and gas x and drank lots of water - unfortunately this process is alot of trying things and eliminating things - but it’s not hopeless trust me - 

[BlackRaven135]

Odd you ask, as I just bought some probiotics to take 1/2 hour before breakfast

Almonds are on my list. Walnuts are fine. I have done fairly well today with little bloating but I have not been on a heavy fiber grain bean filled diet and tonight have planned accordingly also

I decided today to do the best I can but as I said before I NEED to set aside heavy food of all types. I prefer short grain brown/red/black and wild rice combo that Lundberg offers and also the pasta from brown rice. I never liked white variety

Beans will just have to be shelved for emergencies as well lentils and other grains which others seem to be okay with

Don't miss dairy

I thought this AM as I had my cafe latte with oat milk, "Why on earth did I ever put milk in it? Oat milk much richer flavor" 

I do NOT miss eggs but I am STILL fighting bread (but today at the store did manage to keep from reaching for it. . nice rich, multi grain bread. Not the noxious plastic stuff)

I really am beginning to believe blood type might be accurate as I gravitate to a carnivore eating with some rice thrown in and veggies and fruit (particularly berries, apples and dark black cherries)

Years ago on the Adkins plan and actually felt the best so that is why I say perhaps THIS is what I need without HEAVY grains even if they are not on my list save for wheat

 

[Wheatwacked]

On 4/27/2022 at 10:07 PM, BlackRaven135 said:

Balela on top of the greens, a gluten free toritlla 

You might double check for cross contamination of the balela or the tortilla. For example, falafel, also from chickpeas but Osem has wheat in it. Same with their potato pancake mixes.

Some people have withdrawal symptoms for two weeks or so. Wheat is an addictive product.

Canyon Bakehouse Heritage Style Honey Wheat is my favorite. Normal size slices and good mouth feel. I might even buy a toaster one day but for now I keep it frozen, break off the slices I want and nuke them for one minute.

Most of the lactase we need for digesting lactose comes from our gut biome (lactobacillus) and they can be killed off by antibiotics and overwhelming bad bacteria. They like homemade pickles (not sterilized and no vinegar) 100% grass-fed dairy is less inflammatory than commercial dairy.

9 hours ago, BlackRaven135 said:

panhypopit

I am sorry to hear that. 

On 4/27/2022 at 11:24 PM, knitty kitty said:

Autoimmune Protocol diet

 AIP is a good idea to start the healing instead of hit or miss guessing. Be sure to replace the vitamins that you are losing by not eating certain foods. Wheat products are "fortified" while gluten free is not. And the western diet worldwide is generally deficient in potassium and choline. Vitamin D is often low in autoimmune diseases. Did you have a biopsy? It is not uncommon to blood test negative, yet have a positive biopsy.

My brother did the Atkins diet and his cardiologist said keep it up, but he didn't and is back on Blood pressure and cholesterol medication.  

Edited April 29, 2022 by Wheatwacked

[Flash1970]

I was never so sick as when I was first diagnosed with celiac.  I stopped eating all wheat etc. I didn't know that I was going through withdrawal.  Wheat is very addictive. After the first few months,  I started to feel better although not all the way.  That's when I read the wheat belly diet book.  I eliminated all grains and grain products.  Which meant no processed foods, since this was 12 years ago.  So shop the outer aisles of the grocery store and make my own food.  There are a lot more choices now,  but read the labels carefully.  Everything is made with rice or rice syrup.  Avoid like the plague. To go back,  when I stopped all grains I got better and no brain fog. Doesn't happen overnight,  but eventually.  Hang in there. 

[Wheatwacked]

My brother handed me a copy of Wheatbelly the last time I saw him essentially on his death bed a few weeks before he died. Six months earlier just before surgery to fix a stoma between his intestine and bladder I had begged him to start GFD. I'll never know if it was a joke or admitting I was right.

[Scott Adams]

I doubt it was a joke, and it sounds like he may have been trying to gain more knowledge about his situation. The fact that he gave a copy to you may have been a message thanking you, at least that's how it sounds to me. Any idea if he went gluten-free in his final days?

[Flash1970]

5 hours ago, Wheatwacked said:

My brother handed me a copy of Wheatbelly the last time I saw him essentially on his death bed a few weeks before he died. Six months earlier just before surgery to fix a stoma between his intestine and bladder I had begged him to start GFD. I'll never know if it was a joke or admitting I was right.

I'm so sorry for your loss. I think this book saved my life.  I don't know if you have celiac disease.  If you do,  I'd definitely recommend this book.  

[Wheatwacked]

Died with a Hawaiin role in hand in hand.😇 It's a shame, he survived one lung out, triple bypass combo, and 15 years later anther tenth of the remaining lung for a biopsy that turned out to be wood fiber. Only to be taken out by a leaky gut.

@Flash1970 Thank you. My son was diagnosed when he weaned in 1976, and I bloated up in 2012.

[Flash1970]

4 hours ago, Wheatwacked said:

Died with a Hawaiin role in hand in hand.😇 It's a shame, he survived one lung out, triple bypass combo, and 15 years later anther tenth of the remaining lung for a biopsy that turned out to be wood fiber. Only to be taken out by a leaky gut.

@Flash1970 Thank you. My son was diagnosed when he weaned in 1976, and I bloated up in 2012.

That's awful.  Wheat belly was written by a cardiologist.  People don't want to change their eating habits. Such a simple remedy that makes a world of difference. 

[Shamogi]

On 5/4/2022 at 7:33 AM, Flash1970 said:

I was never so sick as when I was first diagnosed with celiac.  I stopped eating all wheat etc. I didn't know that I was going through withdrawal.  Wheat is very addictive. After the first few months,  I started to feel better although not all the way.  That's when I read the wheat belly diet book.  I eliminated all grains and grain products.  Which meant no processed foods, since this was 12 years ago.  So shop the outer aisles of the grocery store and make my own food.  There are a lot more choices now,  but read the labels carefully.  Everything is made with rice or rice syrup.  Avoid like the plague. To go back,  when I stopped all grains I got better and no brain fog. Doesn't happen overnight,  but eventually.  Hang in there. 

Hi,

I went gluten-free 6 weeks ago,and the only grain I have been eating was (gluten-free) oats in the morning,I stopped eating them as well 2 weeks ago as I had been reading about grain free,and my body seemed to be telling me to pursue that course of action.I am still going through withdrawals.These have consisted mostly of feeling depressed,anxious and emotionally volatile.The pre-existing fatigue and brain fog have not cleared yet,though other symptoms are improving.

If you don't mind,I would like to ask a couple of questions.

Did you have any similar withdrawal symptoms to those I am experiencing?

How many months did it take for you to fully recover?

All the best,

Shamogi

 

[Scott Adams]

We have articles and posts that discuss gluten withdrawal in more detail:

https://www.celiac.com/search/?q=withdrawal&quick=1&type=cms_records2

 and Dr. Rodney Ford has written about it in more detail here:

 

[Shamogi]

On 6/9/2022 at 5:53 PM, Scott Adams said:

We have articles and posts that discuss gluten withdrawal in more detail:

https://www.celiac.com/search/?q=withdrawal&quick=1&type=cms_records2

 and Dr. Rodney Ford has written about it in more detail here:

 

Fantastic,thank-you for taking the time to send me the link Scott

[Flash1970]

On 6/9/2022 at 4:32 AM, Shamogi said:

Hi,

I went gluten-free 6 weeks ago,and the only grain I have been eating was (gluten-free) oats in the morning,I stopped eating them as well 2 weeks ago as I had been reading about grain free,and my body seemed to be telling me to pursue that course of action.I am still going through withdrawals.These have consisted mostly of feeling depressed,anxious and emotionally volatile.The pre-existing fatigue and brain fog have not cleared yet,though other symptoms are improving.

If you don't mind,I would like to ask a couple of questions.

Did you have any similar withdrawal symptoms to those I am experiencing?

How many months did it take for you to fully recover?

All the best,

Shamogi

 

Hi,  It takes a long time for symptoms to disappear.  Withdrawal symptoms were really bad.  I felt way worse at first when I quit eating gluten.  Stomachaches,  diarrhea,  e.t.c.  those went away after about 3-4 weeks.  At about 4 months,  if started to feel a bit better.  Not as much inflammation. Still was having brain fog, tiredness.  Finally for some reason,  I started reading the wheat belly diet book.  I think it had  some recipes I liked.  Written by a cardiologist.  After I read that book,  I gave up all grains.  Took a few months,  but the brain fog and symptoms  disappeared. 

One thing you have to remember is that this is a lifetime disease.  As long as you control your diet,  you remain pretty healthy.  Everything takes a long time to clear up, months not weeks.  There is no quick answer and what works for one person may not work for you.  Very individualized.  Don't get discouraged.  It's totally manageable,  even more so now,  than when I was diagnosed.  Make sure if you buy packaged foods that you read the label carefully.  A lot of it has rice flour and can be made on equipment that also processes  wheat. 

Hang in there.  It will get better and easier.

[MADMOM]

11 hours ago, Flash1970 said:

Hi,  It takes a long time for symptoms to disappear.  Withdrawal symptoms were really bad.  I felt way worse at first when I quit eating gluten.  Stomachaches,  diarrhea,  e.t.c.  those went away after about 3-4 weeks.  At about 4 months,  if started to feel a bit better.  Not as much inflammation. Still was having brain fog, tiredness.  Finally for some reason,  I started reading the wheat belly diet book.  I think it had  some recipes I liked.  Written by a cardiologist.  After I read that book,  I gave up all grains.  Took a few months,  but the brain fog and symptoms  disappeared. 

One thing you have to remember is that this is a lifetime disease.  As long as you control your diet,  you remain pretty healthy.  Everything takes a long time to clear up, months not weeks.  There is no quick answer and what works for one person may not work for you.  Very individualized.  Don't get discouraged.  It's totally manageable,  even more so now,  than when I was diagnosed.  Make sure if you buy packaged foods that you read the label carefully.  A lot of it has rice flour and can be made on equipment that also processes  wheat. 

Hang in there.  It will get better and easier.

i agree i felt the same way at the beginning - very frustrated and anxious but after 3-4 months i started to feel so much better and found so many gluten-free options - i do not feel as limited as i used to - i’ve lowered the iTG and TTG levels and gained 15 pounds - my iron level is finally up in mid normal range and i have so much more energy - stay positive you will feel so much better before you know it 

[Shamogi]

On 6/11/2022 at 8:02 AM, Flash1970 said:

Hi,  It takes a long time for symptoms to disappear.  Withdrawal symptoms were really bad.  I felt way worse at first when I quit eating gluten.  Stomachaches,  diarrhea,  e.t.c.  those went away after about 3-4 weeks.  At about 4 months,  if started to feel a bit better.  Not as much inflammation. Still was having brain fog, tiredness.  Finally for some reason,  I started reading the wheat belly diet book.  I think it had  some recipes I liked.  Written by a cardiologist.  After I read that book,  I gave up all grains.  Took a few months,  but the brain fog and symptoms  disappeared. 

One thing you have to remember is that this is a lifetime disease.  As long as you control your diet,  you remain pretty healthy.  Everything takes a long time to clear up, months not weeks.  There is no quick answer and what works for one person may not work for you.  Very individualized.  Don't get discouraged.  It's totally manageable,  even more so now,  than when I was diagnosed.  Make sure if you buy packaged foods that you read the label carefully.  A lot of it has rice flour and can be made on equipment that also processes  wheat. 

Hang in there.  It will get better and easier.

Hi,

thank-you for taking the time to reply.It is helpful to hear from others who got through the withdrawal process,and to be aware that it can be quite a drawn out process.I have been regaining some flexibility in my body,so that keeps me inspired to carry on.

All the best,

Shamogi

[Shamogi]

On 6/11/2022 at 7:28 PM, MADMOM said:

i agree i felt the same way at the beginning - very frustrated and anxious but after 3-4 months i started to feel so much better and found so many gluten-free options - i do not feel as limited as i used to - i’ve lowered the iTG and TTG levels and gained 15 pounds - my iron level is finally up in mid normal range and i have so much more energy - stay positive you will feel so much better before you know it 

Hi MADMOM,

thanks for your reply,that is really encouraging to hear.The thought of having lots more energy is so inspiring!

All the best,

Shamogi