Need Encouragement

[FruitEnthusiast]

I’ve been gluten free and recovering from gluten intolerance for almost two years now. I was so sensitive to many other foods too, I’ve been one of the many on here who have had to adhere to an extremely limited diet all this time. Gluten and dairy have been out permanently from the start. I currently eat no grains at all, no nightshades.

 

My diet is stable and unchanging at this point. It’s limited to vegetables, fruit, almonds, sunflower seeds, chicken and fish. No condiments other than olive oil, lemon juice, sea salt, black pepper, evaporated cane juice crystals (very sparingly). I only eat whole foods I prepare at home, or canned/frozen fruit/veg. I haven’t eaten out or at anyone else’s house in 2 years.

 

I still find that my body is so sensitive to changes. Each time I have tried anything new I pay for 2-3 months afterward - each time the SIBO problem flares back up again. Since I also deal with a slow transit digestive issue it complicates everything. 

 

The last new food I tried was almond butter. The brand I liked changed to a pre-mixed type instead of the oil at the top type. I ate two jars of it over a month and I’m still recovering from that after for over two months. It had to have been hydrogenated which made it not only a processed food but a bad one, major oops on that one.

 

It made my SIBO start up again. I can’t tolerate the antibiotics for SIBO, or peppermint caps. The Motil Pro caps my ND just put me on that were mostly ginger made me really sick (nausea, headache) for the last two days. Better today. No more SIBO related supplements for me. My food has to be my medicine - lots of alkaline vegetables - it’s not anything to jump up for joy about, but as long as I stick to what works I don’t regret it.

 

I’m dying to use apple cider vinegar in my salad dressing! I’m afraid to - I already had a problem with mold - anything fermented or cultured - before the gluten problem. I think I’d be ok with more seasoning - garlic, paprika, cayenne, herbs. I want to buy a blend as long as it doesn’t have any grain binders in it. I’ve been told to avoid onion as it can be irritating I guess.

 

There are positive changes. I’m don’t feel sick nearly as often. The brain fog is soooo much better. I can think clearly again after all this time… in some ways that makes me more impatient to get better.

 

I’m hoping to hear from anyone who can relate to this and offer encouragement that I will be able to expand my diet at some point and move beyond this to a somewhat normal life again.

[BlessedMommy]

It's hard, very hard, when you have multiple issues going on at the same time. In addition to gluten intolerance, I can't tolerate dairy either and use very little sweeteners or sugar, due to a weak immune system.

 

It sounds like you've done a really great job of stepping up to the challenge though and making the best of it! That must be incredibly difficult. 

[1desperateladysaved]

We share many sensitivities.  I shudder to think of trying apple cider vinegar or anything fermented!  We  began our gluten free trek about the same time.  I have had many ups and downs too.  I successfully (I think) added more foods back in after using IgG to help my gut heal and digestive enzymes to help break down my food.  I still avoid spices of nearly every kind, peppermint, and have had some memorable battles with cross contamination.  My mind is clear and I have some energy.  Still I am accessing damage and dealing with the symptoms that are left.

 

D

[IrishHeart]

SIBO is treated with antibiotics, probiotics, or a combination of both.

Do you take a broad spectrum probiotic?

[IrishHeart]

We share many sensitivities.  I shudder to think of trying apple cider vinegar or anything fermented!  We  began our gluten free trek about the same time.  I have had many ups and downs too.  I successfully (I think) added more foods back in after using IgG to help my gut heal and digestive enzymes to help break down my food.  I still avoid spices of nearly every kind, peppermint, and have had some memorable battles with cross contamination.  My mind is clear and I have some energy.  Still I am accessing damage and dealing with the symptoms that are left.

 

D

 

 

What does "using IgG to help heal my gut" mean? 

[IrishHeart]

FE, I am pretty sure we discussed all this with you recently on this thread here:

 

 

https://www.celiac.com/forums/topic/106681-need-a-dr-referral-in-long-beach-ca-area/#entry908507

 

You may need a doctor's help at this point. If you are still feeling poorly, something is amiss.

 

Just offering my honest, humble opinion here.

[FruitEnthusiast]

SIBO is treated with antibiotics, probiotics, or a combination of both.

Do you take a broad spectrum probiotic?

 

I tried Metronidazole, but I couldn't take the side effects, bad headaches, and I'm allergic to the other one the Dr recommended, Eurythromycin, so that was a bummer.

 

Yes, I've taken two refrigerated probiotics from a health food store daily for over a year. But, what do you mean, broad spectrum? Mine have Saccharomyces Boulardii + MOS, and the other one has 3 types of Bifidobacterium and 7 types of Lactobacillus in it. Does that sound like the right kind? There are tons of types in the case at the store. I'm taking what my Naturopathic Dr recommended, but she's been wrong before, so I don't know.

 

I haven't actually been tested for SIBO, but my digestive symptoms and BM results fit the description when I go visit the ole' bathroom. Sorry if that's TMI. I'm beyond embarrassment at this point.

[FruitEnthusiast]

FE, I am pretty sure we discussed all this with you recently on this thread here:

 

 

https://www.celiac.com/forums/topic/106681-need-a-dr-referral-in-long-beach-ca-area/#entry908507

 

You may need a doctor's help at this point. If you are still feeling poorly, something is amiss.

 

Just offering my honest, humble opinion here.

 

Not really, I had asked for Dr referrals before. I have a GI and an ND already who have tried their best. Gotta Ski said the Doctors at UCLA were best with newly diagnosed people. I find more helpful info here than at the Dr, anyway so that's why I'm asking for input.

[IrishHeart]

 

 

I haven't actually been tested for SIBO, but my digestive symptoms and BM results fit the description when I go visit the ole' bathroom. Sorry if that's TMI. I'm beyond embarrassment at this point.

 

If you have not been tested for SIBO, I would not assume that is what you have, hon.

[GottaSki]

Not really, I had asked for Dr referrals before. I have a GI and an ND already who have tried their best. Gotta Ski said the Doctors at UCLA were best with newly diagnosed people. I find more helpful info here than at the Dr, anyway so that's why I'm asking for input.

 

Actually, what I said is Dr. Harmon is an excellent celiac doctor and still may be the best choice if you want to establish care with a gastro that has celiac knowledge.

 

I stand by that -- if you are not improving, you need an excellent team of doctors -- a Primary that will think outside the box - or at least consider all possibilities, along with the best Gastro and Allergist you can find - again -- in my opinion.

 

"You are in a bit of a pickle....I would hate for Dr. Harmon to be a wasted effort as he does specialize in Celiac Disease and you are well beyond wanting celiac testing as you already live completely gluten-free...perhaps there is a gastro that has more experience with SIBO...or maybe you should ask your primary to order a SIBO test for you?

 

I still think Dr. Harmon is an excellent choice if you want to establish care with a gastro that has extensive celiac knowledge."   pulled from FE's doctor request thread

[FruitEnthusiast]

I’ve been gluten free and recovering from gluten intolerance for almost two years now.

I’m hoping to hear from anyone who can relate to this and offer encouragement that I will be able to expand my diet at some point and move beyond this to a somewhat normal life again.

 

Thanks so much Irish Heart and Gotta Ski for your input on SIBO. I will look into that further. I hadn't really intended that to be the subject of this post but I really appreciate you catching that. The Doctor's I've seen haven't been too helpful so far, but I can look further to see if I can find anyone with more experience with gluten/Celiac. Looks like UCLA is the best place to start. I have an appointment there already. I'll try to have more of an open mind about what they have to offer.

 

I'm still interested in hearing from anyone who can offer understanding and encouragement because I start to feel sad sometimes going through this so long and I really wanted to hear someone tell me that they've gone through it and come out on the other side. I believe I will get through it, but it helps to have company along the way and to hear from anyone who's beyond where I am now.

[GottaSki]

Ah...gotcha

 

In my opinion, this place never disappoints to support those that need a little encouragement.

 

Good luck to you....I do hope you are feeling better very soon.

[FruitEnthusiast]

It's hard, very hard, when you have multiple issues going on at the same time. In addition to gluten intolerance, I can't tolerate dairy either and use very little sweeteners or sugar, due to a weak immune system.

 

It sounds like you've done a really great job of stepping up to the challenge though and making the best of it! That must be incredibly difficult. 

 

Thank you for your kind, understanding, and supportive response, it's what I needed to hear most of all

[NoGlutenCooties]

I had an overgrowth of bad bacteria years ago - no one mentioned "SIBO" but it was determined via a stool test.  The normal number for the bad bacteria was under 200 and I was at over 12,000.  I had absolutely no interest in antibiotics as they do not discriminate and just kill everybody and I blame them for the problem in the first place.  The chiropractor I was seeing at the time suggested Colosan.  It is a magnesium-oxide powder that breaks down in the intestine.  When it breaks down it releases magnesium and oxygen.  The magnesium helps bowel function (a little too much if you take more than the recommended dose) and the oxygen kills the bad bacteria while it feeds the good bacteria.  This works because the bad bacteria are anaerobic and die when exposed to oxygen, but the good bacteria actually thrive on oxygen.  It took 6 months for my bad bacteria number to come down from 12,000 to about 1,000 and another few months to get back down under 200.

 

I don't remember what the stool test was or what the numbers mean - this was over 20 years ago.  But the Colosan really works and it's gentle - as long as you ease into it and don't take too much.  I was only taking about 1 teaspoon per day, once a day.

[FruitEnthusiast]

Thank you, yes what I have is an overgrowth of bad bacteria, I think I wont try to give it a name. I cured it once already through diet using alkaline foods, green smoothies, staying away from sugar, I don't even drink juice anymore. It does take time, lots of time.

 

I was doing really well, then I gave my ex husband another chance which threw off my diet all over again as he wanted to make my food more interesting. He's back out of the picture for six months now after being back together a year. He was going to take care of me but instead it was a year of extreme stress and just backslide in general. It added a year and a half to my recovery time! Now I live alone again and I can focus on me. I'm back to the alkaline foods and I am having progress, just slow.

 

Each time I try to speed up the healing time with a supplement I have a bad reaction that makes me feel worse. I am very sensitive and have slow digestion to begin with. The Colosan sounds interesting, I'm really glad to know about it.  I know I can tolerate magnesium, I take it every day already. I do have a problem with anything that tries to move too fast through me as my body can't cope and it causes severe internal distress. It's amazing how many health professionals you can see and still not get all the info.

 

I still haven't had a stool test. My naturopath insisted that the basic stool test most people get wouldn't be conclusive enough, even though I asked for it several times. She insisted I get one that costs $400 (which I can't afford) to pinpoint exactly the type of bacteria in order to treat it. My GI seems really good but he didn't suggest a stool test, he just wrote a prescription for antibiotics. I don't like to take them either, then when I did the side effects were too awful to tolerate.

 

I think I know what the problem is and I know what to do for it, and I just have to be patient. I got myself well once already doing what I'm doing now. I'm reluctant to try new doctors because they generally just get in there and try new things to speed up my healing which just make me feel worse. Most recently it was the ginger caps. I'm still recovering from that days after stopping them.

 

You said it took six months plus for you to get your bacteria imbalance under control, which helps me tremendously. It takes time to heal, just like I keep saying. It helps me to keep going and not be alarmed by the slow process. It is what it is. I find rest, lots of sleep, and keeping stress to a minimum help as much as anything. Those things help me feel well enough to take my walks which keep my spirits up as well. Thanks so much.

[ashleigh2]

Hey there! I am so sorry to hear about your continuing frustrations and problems with food. It can be very challenging and I wish I could wave a magic wand and make this all disappear for you, but I unfortunately cannot. 

 

While reading your original post, I felt that you were victimizing yourself-you don't want to do that! Many other people out there suffer exactly the same way you do-you are not alone in this, I promise you that. Empower yourself by focusing on what is working, not letting the negativity in, and know.. this too shall pass. 

 

It sounds like you have an extremely restricted diet. Are the foods you are avoiding being avoided because you have been tested for allergies or because you felt they were not good for your body? Adding foods and eliminating foods with the help of a professional can actually be more detrimental to your health. If you take away a food for too long, you can actually create an intolerance to it, making it harder to add back in later. If you take away certain foods because you believe it to be a trigger, when in fact it is something else, well then that's no good either. I highly recommend working with a trained professional in gluten awareness, an allergist, herbalist, naturopathic doctor, or someone who truly understands what your needs are. 

 

Don't limit yourself to avoid going out to eat, not visiting friends, ect..that can actually increase the anxiety and depression around food, and only hinder your healing even more! You don't want that and we don't want that for you! Happy people heal faster. Bring your own foods, carry snacks, eat before you go out, and educate your friends about your dietary choices so you can have more fun living a fulfilling life!

 

Lastly, don't let others feel sorry for you. You need to gain the right perspective. Enjoy the time with your friends and family without putting all this pressure around food. Make it about the company, not about what's being served. Remember why you are doing all of this-to improve your health. 

 

You will heal, you will get better, you will get through this. You may not be able to do it alone, and thats ok!! reach out to professionals and get the help you truly deserve! 

[IrishHeart]

. If you take away a food for too long, you can actually create an intolerance to it, making it harder to add back in later. If you take away certain foods because you believe it to be a trigger, when in fact it is something else, well then that's no good either. I highly recommend working with a trained professional in gluten awareness, an allergist, herbalist, naturopathic doctor, or someone who truly understands what your needs are.

With all due respect, this is simply untrue. That is not how food intolerances work at all.

 

If I do not eat lobster or watermelon for months on end, I do not "suddenly trigger an intolerance". Intolerances occur when someone is actively eating the food protein.

 

In fact, on an elimination diet, the only way to know for sure you have a food intolerance of any kind, is by taking a food protein out for 3-6 months which  may diminish the reactions to that food and then, you can add it back in to see if you have less of a reaction. Every health care professional I know  agrees this is how it works. 

 

Who exactly is a "trained professional in gluten awareness"? I am thinking that some of us with celiac who have walked this path for awhile may qualify for that "title".

[FruitEnthusiast]

While reading your original post, I felt that you were victimizing yourself-you don't want to do that! Many other people out there suffer exactly the same way you do-you are not alone in this, I promise you that. Empower yourself by focusing on what is working, not letting the negativity in, and know.. this too shall pass. 

 

Don't limit yourself to avoid going out to eat, not visiting friends, ect..that can actually increase the anxiety and depression around food, and only hinder your healing even more! You don't want that and we don't want that for you! Happy people heal faster. Bring your own foods, carry snacks, eat before you go out, and educate your friends about your dietary choices so you can have more fun living a fulfilling life!

 

Lastly, don't let others feel sorry for you. You need to gain the right perspective. Enjoy the time with your friends and family without putting all this pressure around food. Make it about the company, not about what's being served. Remember why you are doing all of this-to improve your health. 

 

You may not be able to do it alone, and thats ok!! reach out to professionals and get the help you truly deserve!

 

Wow your description of me sounds like someone else. I am one of the most positive people I know. I keep expecting to be well each time I have a good day because I'm such an optimist. I've had to learn to wait and see if the good lasts or I'm let down.

 

This is one place we can be real about what we are going through. I am so sick and exhausted that I have been unable to work in a year. I'm not choosing to stay home, some of us are sick enough from this that we don't yet have the choices you seem to have. I don't have the energy to even shop for my own food lately. So telling me to "get out and have fun" is not exacty... well, helpful. I can see I haven't been as forunate as you have in finding the right healthcare professionals so I'm still working on that. I'm very happy for you that things seem to be going so well for you and I am going to find encouragement in that for my future. I'm sure you meant well, but it came across to me, uh... a bit insulting. I think it's important to remember to be sensitive with those of us who are still very ill. Thanks just the same. Take care.

[GottaSki]

Wow your description of me sounds like someone else. I am one of the most positive people I know. I keep expecting to be well each time I have a good day because I'm such an optimist. I've had to learn to wait and see if the good lasts or I'm let down.

 

This is one place we can be real about what we are going through. I am so sick and exhausted that I have been unable to work in a year. I'm not choosing to stay home, some of us are sick enough from this that we don't yet have the choices you seem to have. I don't have the energy to even shop for my own food lately. So telling me to "get out and have fun" is not exacty... well, helpful. I can see I haven't been as forunate as you have in finding the right healthcare professionals so I'm still working on that. I'm very happy for you that things seem to be going so well for you and I am going to find encouragement in that for my future. I'm sure you meant well, but it came across to me, uh... a bit insulting. I think it's important to remember to be sensitive with those of us who are still very ill. Thanks just the same. Take care.

 

I agree completely with this statement.

 

For those of us that do not heal right away -- no one has the right to suggest we are not trying hard enough. 

 

Sorry, I had enough of that prior to diagnosis - I will never let someone suggest that to me again.  Glad you did not.

 

Hang in there FE!

[FruitEnthusiast]

Thanks for your support GS!!!

[ashleigh2]

With all due respect, this is simply untrue. That is not how food intolerances work at all.

 

If I do not eat lobster or watermelon for months on end, I do not "suddenly trigger an intolerance". Intolerances occur when someone is actively eating the food protein.

 

In fact, on an elimination diet, the only way to know for sure you have a food intolerance of any kind, is by taking a food protein out for 3-6 months which  may diminish the reactions to that food and then, you can add it back in to see if you have less of a reaction. Every health care professional I know  agrees this is how it works. 

 

Who exactly is a "trained professional in gluten awareness"? I am thinking that some of us with celiac who have walked this path for awhile may qualify for that "title".

 

 

Well it's a good thing I didn't mention anything about lobster or watermelon then huh?? You are correct, food intolerances happen when a person eats the trigger food but it can happen if you do not consume that food for a period of time. Everyone's body is different and I'm not saying it will happen to everyone who doesn't eat a certain food for a certain amount of time, its called bioindividuality.  With all due respect you are entitled to your opinions but this is in fact a truth. This is my field of study and I make a living helping others go gluten free, many who have celiac. I am a trained professional in gluten awareness, that's who! Just because I wasn't diagnosed with Celiac does not mean I haven't walked a very hard and difficult path on my journey towards becoming gluten-free. I've been gluten-free for over 3 years and think I have gained enough experience and helped enough people to be able to be called a gluten free expert plus I went to school for this

[ashleigh2]

Wow your description of me sounds like someone else. I am one of the most positive people I know. I keep expecting to be well each time I have a good day because I'm such an optimist. I've had to learn to wait and see if the good lasts or I'm let down.

 

This is one place we can be real about what we are going through. I am so sick and exhausted that I have been unable to work in a year. I'm not choosing to stay home, some of us are sick enough from this that we don't yet have the choices you seem to have. I don't have the energy to even shop for my own food lately. So telling me to "get out and have fun" is not exacty... well, helpful. I can see I haven't been as forunate as you have in finding the right healthcare professionals so I'm still working on that. I'm very happy for you that things seem to be going so well for you and I am going to find encouragement in that for my future. I'm sure you meant well, but it came across to me, uh... a bit insulting. I think it's important to remember to be sensitive with those of us who are still very ill. Thanks just the same. Take care.

I didn't mean to be insulting. I'm sorry it came across that way. My "tough love" style isn't for everyone

[kareng]

Well it's a good thing I didn't mention anything about lobster or watermelon then huh?? You are correct, food intolerances happen when a person eats the trigger food but it can happen if you do not consume that food for a period of time. Everyone's body is different and I'm not saying it will happen to everyone who doesn't eat a certain food for a certain amount of time, its called bioindividuality. With all due respect you are entitled to your opinions but this is in fact a truth. This is my field of study and I make a living helping others go gluten free, many who have celiac. I am a trained professional in gluten awareness, that's who! Just because I wasn't diagnosed with Celiac does not mean I haven't walked a very hard and difficult path on my journey towards becoming gluten-free. I've been gluten-free for over 3 years and think I have gained enough experience and helped enough people to be able to be called a gluten free expert plus I went to school for this

Please provide some real scientific basis for this statement of fact - "it can happen if you do not consume that food for a period of time."

Also, please explain how a a person is a "trained professional in gluten awareness,". Is that a med school field?

[IrishHeart]

Well it's a good thing I didn't mention anything about lobster or watermelon then huh?? You are correct, food intolerances happen when a person eats the trigger food but it can happen if you do not consume that food for a period of time. Everyone's body is different and I'm not saying it will happen to everyone who doesn't eat a certain food for a certain amount of time, its called bioindividuality.  With all due respect you are entitled to your opinions but this is in fact a truth. This is my field of study and I make a living helping others go gluten free, many who have celiac. I am a trained professional in gluten awareness, that's who! Just because I wasn't diagnosed with Celiac does not mean I haven't walked a very hard and difficult path on my journey towards becoming gluten-free. I've been gluten-free for over 3 years and think I have gained enough experience and helped enough people to be able to be called a gluten free expert plus I went to school for this

 

Well, I started out with the words "with all due respect" but you've come back with a few posts that are already abrasive.

I suggest two things: When you come into an established community of forum members, you start out on the right foot.

(1) You don't tell people they are "victimizing themselves" and (2) you don't state things as facts without evidence.

That's not how we roll on here. This is just IMHO, of course.

 

To use your same argument: I've been gluten free for over 3 years and I've helped enough people to be called a gluten expert, too. Yet, but I don't start out "helping" with a new group of people by telling them what I think about them and I certainly don't give wrong info. (at least I try very hard not to)

 

What "school" did you attend that makes you any more qualified? As far as I know, there are no accredited schools offering degrees in "gluten" or celiac.

 

[GottaSki]

I didn't mean to be insulting. I'm sorry it came across that way. My "tough love" style isn't for everyone

 

You are a brand new member here.  I find nothing "light" or "loving" about your comments.  "Tough Love" has to come from someone that has established respect with the intended recipient.  You have not established this here.

 

While you may think you understand what it is like to have Celiac Disease because you removed gluten and feel better....I can tell you from personal experience that problems associated with this disease do not always have a simple solution.  

 

If you are here to further your understanding of a very complicated disease - great, there are many of us that have researched Celiac Disease along with its various associated diseases, disorders and complications for many years.  

 

Feel free to read, learn and ask questions, but if you choose to respond in the same condescending manner or refuse to provide sources for unsupported claims that we have seen in your introductory posts, you will not be welcome here.