Please, I Need Urgent Advice

[CNV2855]

I'm extremely scared right now and I need some advice. I responded to the gluten-free diet at first, then sort of relapsed, and really hunkered down and tried to get things under control. I ended up adopting the GAPS diet and I've been on it for quite a while, but I started losing a ton of weight. Went from almost 180 to 145 in a couple months, even though I'm eating a ton of meat and vegetables.

I started getting very weak, developing dizziness, slightly blurred vision, confusion that comes in goes, abdominal tenderness, and other symptoms that were completely new to me. I've never felt this drained. My GI symptoms have normalized and the diarrhea has stopped in the last couple of weeks, but it feels like I've deteroriated energy/weight-wise a good bit since starting this diet. I've been been waking up with numbness and tingling in my arms, I think partly because I've lost the muscle around my shoulders, and muscle mass all around my body and I can't support them and it's compressing my nerves or something? It's definitely worse when I wake up.

Well I kept losing weight and feeling fatigued so I started prednisone 20mg/day again, five days ago, and got more energy back, but now that's not even really working anymore.

Last night, I ate a few bananas to get some carbs and immediately developed shortness of breath, fatigue, hoarse voice, the weakness got worse, and so on. I have never felt like this, I had extreme difficulty walking or picking up my arms, and I was brought to the ER. They checked my electrolytes (some of these symptoms look like they could be hyponatremia/hyperkalemia related). I'm thinking maybe I had an allergic reaction to the bananas on top of everything else? I also started drinking Bragg's apple cider vinegar a few days ago and had resumption of the GI symptoms, and abdominal pain and stuff after drinking that stuff.

I'm hoping this is a complication of the diet and that maybe my body just isn't getting enough calories from meat/vegetables but I really don't know. The local hospital was stumped and told me to, "try to get into a research hospital asap." I really don't even know what to ask for if I have to go back into the ER.

I was on prednisone just a few months ago, but before the low carb diet, and I was eating a ton of gluten free baked products and I felt really good... and gained a lot of weight. Had a ton of energy, this course of prednisone is nothing like that. I just keep getting weaker and weaker. I've been eating beef+squash+carrots in a broth exclusively for quite an extended period of time and I'm drinking nothing but water. Before the diet, I drank a lot of sugared beverages and they always made me feel better and give me energy... i think because they're easier to digest? Now it's been nothing but water and that's easily a thousand less calories a day that I would normally be getting.

I just had a bowl full of potatoes and I feel a little better... I'd be lying if I didn't say I was scared right now. Could this just be my body not being healthy enough to get enough calories/nutrients from just vegetables and meat since I'm undoubtebly still damaged? I really would like to go back to the ER but my blood tests last night were all normal, other than some out of place hormone markers.

I found this quote:

  Quote

[i then decided to call Dr. Thomas Cowan and do a phone consult. I knew he knew about the GAPS diet and could hopefully help me. After the first ten minutes on the phone with him, he told me I should start eating grains again and that my muscle pain and weakness were due to being on the GAPS diet. I was shocked. He said that many people have come to him with the same problem due to the diet and that he himself had felt this way after going on the diet for a short time. He agreed that it is, in theory, a perfect diet, but that for some reason many people cannot do it.

[Marilyn R]

I've had problems with quinoa, but never with any kind of rice. I buy it in 5 lb. bags from the oriental grocery store. I never tryed the GAPS diet, but I've read some old posts on the forum that indicated it was fairly contoversial.

If you switched to GAPS because you weren't feeling really well, it may be because it really does take some time to heal. I'm not saying I'm for or against GAPS, don't really know much about it. But I believe in getting tested for allergies by an allergist, and changing something in my diet when it makes me feel bad.

I also like to add food that I never or rarely ate before, like mussells, lamb and shrimp, or even goat.

I've noticed that repetititiveness doesn't work especially well. I was feeling great and bought almond flour and made crackers with it along with a fruit crisp. I started having old problems when I ate leftovers for the third day in a row...but that could just be me.

Good luck to you.

[Jestgar]

  On 10/28/2011 at 12:11 AM, CNV2855 said:

I ended up adopting the GAPS diet and I've been on it for quite a while, but I started losing a ton of weight. Went from almost 180 to 145 in a couple months, even though I'm eating a ton of meat and vegetables.

If you've been losing weight and feeling progressively worse for a couple months, why on earth would you continue eating that way? You need to accept responsibility for taking care of yourself, not blindly follow something someone else told you.

And why are you taking steroids without being followed by a doctor? You can cause permanent damage to yourself.

[domesticactivist]

Your symptoms sound to me like they could have to do with poorly regulated blood sugar.

I have some questions...

How long have you been the GAPS diet?

Are you on the full GAPS diet, or still doing intro?

What are you eating on a typical day?

How often are you eating?

Did you read the GAPS book before starting the diet?

What supplements, drugs, etc are you taking, and in what dose?

What is a normal body weight for your gender and height?

[rosetapper23]

I don't know much about the GAPS diet either, but your diet sounds lacking in healthy saturated fats. A diet needs to be balanced with the three macronutrients: carbohydrates, proteins, and saturated fats. If you don't get enough fat, your body has difficulty absorbing fat-soluble vitamins. Please add avocados, organic cheese and butter (if you can tolerate dairy), nuts, and nut butters to your diet. A good diet should make you feel better, not worse.

Some people swear by the GAPS diet for helping them heal. I, however, am doing wondrously well with the Primal/Paleo Diet, which offers a balance of the three macronutrients. If you think you might be interested in learning more, a fantastic book is "Primal Body, Primal Mind." The author really goes into depth with regard to how the body responds at the molecular level to different types of foods. Best book I've ever read on ANY topic.

I hope you start feeling better soon!

[domesticactivist]

  On 10/28/2011 at 2:38 AM, rosetapper23 said:

I don't know much about the GAPS diet either, but your diet sounds lacking in healthy saturated fats. A diet needs to be balanced with the three macronutrients: carbohydrates, proteins, and saturated fats. If you don't get enough fat, your body has difficulty absorbing fat-soluble vitamins. Please add avocados, organic cheese and butter (if you can tolerate dairy), nuts, and nut butters to your diet. A good diet should make you feel better, not worse.

Some people swear by the GAPS diet for helping them heal. I, however, am doing wondrously well with the Primal/Paleo Diet, which offers a balance of the three macronutrients. If you think you might be interested in learning more, a fantastic book is "Primal Body, Primal Mind." The author really goes into depth with regard to how the body responds at the molecular level to different types of foods. Best book I've ever read on ANY topic.

I hope you start feeling better soon!

If a person is doing GAPS, it is extremely *high* in saturated fats. Saturated fat from meat, avacados, eggs, dairy and nuts are all some of the first foods introduced on the GAPS diet.

[CNV2855]

My blood sugar is fine, albeit it's a little less responsive than I'd like. It goes up to about 160-180 after eating and then drops back down to the 90-105 range after about 3 hours.

I ate lots of potatoes and I feel my strength returning fairly quickly. I don't think I am able to digest fats and proteins well or something. I just don't think I was getting enough calories even though I was eating a ton.

How long have you been the GAPS diet?

About a month and a half.

Are you on the full GAPS diet, or still doing intro?

Still on the intro.

What are you eating on a typical day?A stew with tons of meat, squash, and celery. Mostly beef. Occasionally I'll have a banana.

How often are you eating?Several times a day.

Did you read the GAPS book before starting the diet?Yes. And the SCD book.

What supplements, drugs, etc are you taking, and in what dose?

A short course of 20mg of prednisone that I'm going to taper down, evoxac 30mg 3x daily, vitamin d, b-12. All tested for gluten.

What is a normal body weight for your gender and height? I'm 145lbs now but I'm a 25 year old male and I'm 5'10. I've never weighed over 190. It's been a very long time since I've been less than 160.

[domesticactivist]

  On 10/28/2011 at 2:58 AM, CNV2855 said:

My blood sugar is fine, albeit it's a little less responsive than I'd like. It goes up to about 160-180 after eating and then drops back down to the 90-105 range after about 3 hours.

I ate lots of potatoes and I feel my strength returning fairly quickly. I don't think I am able to digest fats and proteins well or something. I just don't think I was getting enough calories even though I was eating a ton.

How long have you been the GAPS diet?

About a month and a half.

Are you on the full GAPS diet, or still doing intro?

Still on the intro.

What are you eating on a typical day?A stew with tons of meat, squash, and celery. Mostly beef. Occasionally I'll have a banana.

How often are you eating?Several times a day.

Did you read the GAPS book before starting the diet?Yes. And the SCD book.

What supplements, drugs, etc are you taking, and in what dose?

A short course of 20mg of prednisone that I'm going to taper down, evoxac 30mg 3x daily, vitamin d, b-12. All tested for gluten.

What is a normal body weight for your gender and height? I'm 145lbs now but I'm a 25 year old male and I'm 5'10. I've never weighed over 190. It's been a very long time since I've been less than 160.

Have you considered moving further into the diet? It sounds like you haven't even introduced all the stage 1 foods yet.

Have you introduced any probiotic foods, probiotic powder, fermented cod liver oil, or trace minerals?

[CNV2855]

  On 10/28/2011 at 3:14 AM, domesticactivist said:

Have you considered moving further into the diet? It sounds like you haven't even introduced all the stage 1 foods yet.

Have you introduced any probiotic foods, probiotic powder, fermented cod liver oil, or trace minerals?

Yeah, I've been taking probiotics. Can't eat anything with seafood as I'm allergic to it, but I have been getting a good amount of olive oil.

I just started feeling incredibly weak, almost like the life was fading out of me. I really can't explain it, it was a horrible feeling but I seem to be doing better right now.

I've always been the kind of person that has "a fast metabolism" which probably means I'm not absorbing foods properly and I've always been underweight, but after Celiac disease came in full force I actually gained quite a bit. Everytime I get glutened, I want to eat a ton and I think it's my body's compensation for not being able to assimilate properly..

Problem was, I don't think I was getting enough out of the meats and stuff. I definitely feel a lot better after eating these potatoes so I don't know. It's also possible that I was allergic to the bananas or that I wasn't getting enough salt, especially since I was drinking so much broth and water.

[domesticactivist]

Well, something is definitely up. I hope you continue to work with a medical team on this one.

It does sound to me like if you are considering staying with GAPS you should add in more of the recommended foods. GAPS does say to use salt (not iodized, though). And hey, if potatoes make you feel better at this stage in the game they might be just what you need.

[CNV2855]

I'm starting to think it was an anaphylactic reaction to either the bananas or the vinegar. I've felt like this before, especially with seafood, where I seem to lose blood pressure, become super weak, super confused, and incredibly lethargic. I've been eating bananas over the last couple of weeks as my primary carbohydrate source and I've felt pretty bad.

Last night, I ate three of them and within minutes I had difficulty breathing, hoarseness, and a ton of other symptoms. I thought it was my potassium but that was normal.

I'm allergic to everything. Nuts, seafood, chicken, pork, bananas, casein, and maybe vinegar/bananas? They all cause this same reaction, although seafood is the worst.

I'm still feeling weak, although I feel better than last time and I'm having a slight difficulty breathing. Last night, I had labored breathing and was completely out of it. Should I go back to the hospital or wait it out?

[Skylark]

It seems like the safest course of action is to head for the hospital if you're having trouble breathing again. Are you alone? If so, definitely go. You don't want to suddenly get worse with nobody to call the ambulance.

That does sound like anaphylaxis, but the ER should have been able to diagnose it. It's not uncommon at all. The speed of the reaction fits an anaphylactic reaction.

GAPS doesn't work for everyone. If you're losing muscle mass, you clearly need change something. You may not make enough pancreatic enzymes and bile to properly digest meat and fats. You also may have a deficiency in B vitamins or essential fatty acids causing the nerve problems -- you're eating an awfully restricted diet.

Give this a read, including all of the comments.

Open Original Shared Link

[AVR1962]

Your post described a reaction, my thoughts would be the banana as far as the restricted breathing, etc after the banana. However, as far as the weakness.....you have lost quite a bit of weight in a very short amount of time and that in itself can cause weakness. You mentioned numbness and fatigue which leads me to wonder where your vit & mineral levels are? Are you getting enough B12, iron, magnesium, d? Have you looked up the side effects of the meds you are taking? And the other thought here is, have you had your thyroid tested?

[ravenwoodglass]

  On 10/28/2011 at 12:11 AM, CNV2855 said:

I'm extremely scared right now and I need some advice. I responded to the gluten-free diet at first, then sort of relapsed, and really hunkered down and tried to get things under control. I ended up adopting the GAPS diet and I've been on it for quite a while, but I started losing a ton of weight. Went from almost 180 to 145 in a couple months, even though I'm eating a ton of meat and vegetables.

I started getting very weak, developing dizziness, slightly blurred vision, confusion that comes in goes, abdominal tenderness, and other symptoms that were completely new to me. I've never felt this drained. My GI symptoms have normalized and the diarrhea has stopped in the last couple of weeks, but it feels like I've deteroriated energy/weight-wise a good bit since starting this diet. I've been been waking up with numbness and tingling in my arms, I think partly because I've lost the muscle around my shoulders, and muscle mass all around my body and I can't support them and it's compressing my nerves or something? It's definitely worse when I wake up.

Well I kept losing weight and feeling fatigued so I started prednisone 20mg/day again, five days ago, and got more energy back, but now that's not even really working anymore.

You say you were feeling quite well on the gluten free diet for a while then 'relapsed'. I would go back to the gluten free diet and drop the GAPS. Your body may not have healed enough to absorb the nutrients the need from that. Some of us become more sensitive or develop other intolerances after we have been gluten-free for just a bit. You may have been getting a bit of CC from a food or non-food source when you started to go down hill again. You could also have developed an intolerance to soy or dairy so those would have been the first thing to drop and see if things improved.

The tingling etc could be that you are low in the B vitamins, especially B12.

It also sounds like you have developed an allergy to bananas, that could also mean an allergy to latex so watch for a reaction if you are using things like latex gloves etc.

I also agree you should not be self medicating with prednisone if that is what you have been doing. If you perhaps ordered it off line also be aware that may not be what you have or it could be contaminated with heavens knows what.

Go back to a straight gluten free diet and then if things do not improve see your doctor. Not everything is gluten and you may have something else going on.

[bny06]

I'm new at all of this as well (7weeks gluten free)however I had weakness (all over, especially in hands though) with tingling/burning achy twitching waking me up especially at night as well AFTER i went gluten free.. a few weeks later I realized (after a bad GI flare up again with more weight loss and increased bowel movements) that I had an issue with Caisen.. have you elimated that from your diet? I feel like since eliminating that I may be on the right road.. good luck! I had no idea there was such a learning curve to this all!!!

[bny06]

oh and i meant to say- after ingesting caisen (not knowing it at the time) I felt disoriented/drunk feeling as well.. for hours.. it was the strangest thing!

[alex11602]

There are some people that just have to have the carbs and since you feel better when you eat potatoes I would say that may be the problem. I know that I get ill if I do not have either potatoes or rice.

[GFinDC]

Well, you are not me, so this may not apply at all. But I wouldn't do well on a diet including carrots, celery and white potatoes either. All three of those are problem foods for me that cause me lots of GI problems. Tomatoes and peppers are also bad for me. That's doesn't mean you will react to them of course, but it is possible. Tomatoes and peppers are nightshades, and they often are lumped with potatoes as problem foods for some of us.

So maybe you could try eliminating some of the common problem foods that affect some celiacs and see if you have any improvement. Dairy, soy, eggs, corn, and nuts are also common problems.

Maybe try sweet potatoes as an alternative, or onions or green veggies.