Help and suggestions appreciated

[Jamie H]

I have been having digestion problems for a few years now and have recently noticed it getting worse. The last year I have been mostly having loose stools and diarrhoea mixed with constipation. I saw my GP a few months ago and was given a blood test and stool sample test. Nothing was found to be abnormal, including a negative for Celiac disease.

My GP recommended I try the FODMAP diet, which I have been following - my symptoms continued.

I decided to try an elimination diet and found that eating lots of bread seem to cause my diarrhoea to turn yellow and become alot more loose, and oats seem to give me headaches and a general foggy mindedness. So with this I am trying a gluten free diet (even though I have tested negative for Celiac disease), and have been on the diet for around 5 days. The first 2 days I felt great (and did 2 really well formed poops!), but then my old symptoms returned including diarrhoea and the tiredness has gotten much worse as well as the foggy mindedness.

I have been extremely careful with the foods I am consuming. For breakfast I have Mesa Sunrise gluten free cereal, with gluten free rice milk and on alternating days I make a blueberrie, strawberry, flax-seed, and peanut smoothie with water. I have a homemade soup for lunch containing potato, parsnip, swede, ginger, carrots and salt.  For dinner I have either gluten free pasta, quinoa, white rice, or potatoes, with spinach, and or a tomato sauce, and every few days I will alternate with a fish like trout or chicken. I prepare it all myself and season only with paprika or an Italian herb mix. I also drink lots of water between meals.

Today I felt especially tired so I managed to get a GP appointment the same day, I explained my symptoms, and because of the negative effects of going on the gluten free diet my GP suggested eating gluten again, and to try out a drug called mebeverine hydrochloride as in my GP's opinion I have IBS and so this drug might help slow down my stomach.

I would really appreciate any advice anyone has as I am feeling very confused and exhausted both psychically and mentally.

[cyclinglady]

4 hours ago, Jamie H said:

I have been having digestion problems for a few years now and have recently noticed it getting worse. The last year I have been mostly having loose stools and diarrhoea mixed with constipation. I saw my GP a few months ago and was given a blood test and stool sample test. Nothing was found to be abnormal, including a negative for Celiac disease.

My GP recommended I try the FODMAP diet, which I have been following - my symptoms continued.

I decided to try an elimination diet and found that eating lots of bread seem to cause my diarrhoea to turn yellow and become alot more loose, and oats seem to give me headaches and a general foggy mindedness. So with this I am trying a gluten free diet (even though I have tested negative for Celiac disease), and have been on the diet for around 5 days. The first 2 days I felt great (and did 2 really well formed poops!), but then my old symptoms returned including diarrhoea and the tiredness has gotten much worse as well as the foggy mindedness.

I have been extremely careful with the foods I am consuming. For breakfast I have Mesa Sunrise gluten free cereal, with gluten free rice milk and on alternating days I make a blueberrie, strawberry, flax-seed, and peanut smoothie with water. I have a homemade soup for lunch containing potato, parsnip, swede, ginger, carrots and salt.  For dinner I have either gluten free pasta, quinoa, white rice, or potatoes, with spinach, and or a tomato sauce, and every few days I will alternate with a fish like trout or chicken. I prepare it all myself and season only with paprika or an Italian herb mix. I also drink lots of water between meals.

Today I felt especially tired so I managed to get a GP appointment the same day, I explained my symptoms, and because of the negative effects of going on the gluten free diet my GP suggested eating gluten again, and to try out a drug called mebeverine hydrochloride as in my GP's opinion I have IBS and so this drug might help slow down my stomach.

I would really appreciate any advice anyone has as I am feeling very confused and exhausted both psychically and mentally.

You might see if your GP actually gave you the complete celiac panel.  Often they just give the screening TTG which is good but does not catch all celiacs (like me).  

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If you do have celiac disease, five days on a gluten free diet will not reduce symptoms.  It takes weeks to months, even years for symptoms to resolve as this is an autoimmune disorder like lupus or Crohn’s that just happens to have a known trigger — gluten.  I would push for a GI consult.  Years of issues is not good.  Have other autoimmune disorders like Crohn’s or Ulcerative Colitis been ruled out?  

[Juca]

Yes, I would double check those tests. And get a second opinion if necessary. 

If you do have celiac disease, it is normal to feel worse for a few weeks. You can have gluten withdrawal symptoms and/or your immune system can go on red alert.  I was exhausted for about 3 weeks. 

The celiac disease poops can also be easy to recognize, but I am not sure you want to discuss it in detail 

In any case, if you have GI symptoms, I would take a break from milk and grains in general (gluten free or not). So, leave that quinoa for now. That is a good general rule for everyone, whatever is causing the problems. Stick to easy stuff until you feel better: homemade bone broth, some protein, cooked veggies, digestive enzymes with meals, ginger tea. Some people might also feel that too many raw veggies, fiber and fruit can be problematic at first (that's why the doctor reccomended the FODMAP diet).

Introduce some probiotics as soon as you can handle it (can be too violent of a change on your body if you have complicated dysbiosis going on). If you do have IBS, I just read some studies that found that all symptoms subside with daily probiotics in almost 90% of patients (homemade yogurt or probiotic pills). The only problem is, you do have to take it daily... basically forever. 

Hope it helps. 

[Jamie H]

14 hours ago, Juca said:

Yes, I would double check those tests. And get a second opinion if necessary. 

If you do have celiac disease, it is normal to feel worse for a few weeks. You can have gluten withdrawal symptoms and/or your immune system can go on red alert.  I was exhausted for about 3 weeks. 

The celiac disease poops can also be easy to recognize, but I am not sure you want to discuss it in detail 

In any case, if you have GI symptoms, I would take a break from milk and grains in general (gluten free or not). So, leave that quinoa for now. That is a good general rule for everyone, whatever is causing the problems. Stick to easy stuff until you feel better: homemade bone broth, some protein, cooked veggies, digestive enzymes with meals, ginger tea. Some people might also feel that too many raw veggies, fiber and fruit can be problematic at first (that's why the doctor reccomended the FODMAP diet).

Introduce some probiotics as soon as you can handle it (can be too violent of a change on your body if you have complicated dysbiosis going on). If you do have IBS, I just read some studies that found that all symptoms subside with daily probiotics in almost 90% of patients (homemade yogurt or probiotic pills). The only problem is, you do have to take it daily... basically forever. 

Hope it helps. 

Thanks for the reply's, really useful advice.

I am happy to discuss poops - mine have been 4 or 5 times a day, yellow or sometimes light brown coloured mucus that holds together small chewed bits of food that hasn't been digested. These chewed pieces have been on inspection quinoa, and small pieces of carrot - on close examination the mucus is stretchy. The smell is not pleasant, (not that normal poop is!) and this has been going on for a few months. Sometimes my stomach would calm down for a bit and I would have brown cow pat poops, but lately its just been yellow mucus. The day after I stopped eating gluten I had 1 very normal solid brown poop each day for 2 days.

I have been sticking to the FODMAP diet and keeping it gluten free, the last few days I have been feeling progressively worse and I think its because my stomach isn't taking in the sustenance its being fed, which is as you say probably because of the grains. If it turns out to be IBS I will defiantly try the probiotics suggestion, thanks.

I have been trying to get hold of my blood results but it looks like its going to take me a week to get a copy of them. I am not 100% sure what diseases my blood test has ruled out so I shall have to double check.

Again thanks for the advice, really really appreciated!

[Ennis-TX]

Might try a bit more of a keto/paleo diet, the high carbs grains could be a issue. Drop dairy also if your one it. I live on steamed/sauteed/freezedried leafy green veggies, egg whites, nut butters, seed butters/paste, nut flour based baked goods, cocoa nibs, and nut milk based homemade yogurt with vegan protein powders in it. Works great for me easy to digest etc. I sometimes treat myself with some fish or crab cooked super soft and some other things. Whole seeds I really love but recently been having to food process whole seeds into a paste for easy of digestion and turned to kale chips instead of fresh for the same reasons. Sometimes preblending foods before cooking can help with digestion, I blend coconut flour, egg whites, nut milk, nut butters/avacado, and either ground flax, ground chia, or ground whole pumpkin seeds into omelette base the season lightly and garnish with crushed kale chips or a seasoned steamed veggie paste.  I found using a microwave egg cooker keeps it super soft. Digestive enzymes can help you get more out of you food and break it down more, I use Jarrow Enzymes Plus as they are the closest to human pancreatic enzymes.

[Jmg]

Hi Jamie and welcome

On a general note, be aware that most regular doctors don't seem to know an awful lot about celiac / gluten sensitivity / IBS etc. That's not necessarily their fault, they have to know a little about everything after all. 

On 2/8/2018 at 3:35 PM, Jamie H said:

So with this I am trying a gluten free diet (even though I have tested negative for Celiac disease), and have been on the diet for around 5 days. The first 2 days I felt great (and did 2 really well formed poops!), but then my old symptoms returned including diarrhoea and the tiredness has gotten much worse as well as the foggy mindedness.

As CL says above the 5 days you were on this diet is nowhere near long enough.  Changing your diet in any way is likely to irritate an already delicate gut, so don't read too much into the response. That said, you did initially respond to removal of gluten so something to bear in mind. 

I agree with Juca about going easy on all grains and trying to give your stomach as easy a ride as possible. Soups, casseroles. Veggies and well cooked meats.  Keep well hydrated and try and take it easy.  Dairy can also be difficult for your stomach as Ennis says. 

But push for those blood test results, for a referral to a GI and see if you can get some definitive answers. If celiac is excluded it could still be gluten that's causing your problems, it was for me and although I'm left with an NCGS diagnosis that doesn't mean much to most people, living gluten and dairy free has helped me immensely.

Best of luck! 

 

[Juca]

I have been reading an old medical text book. From a time there were no antibody blood tests to confirm celiac disease. So doctors had to rely on physical symptoms for a diagnosis. They had to really pay attention to detail. So, according to it:

"The stool in celiac disease has been vividly described many times as soft and mushy, far more voluminous than the intake of food would warrant, and of particularly foul odor. The words pasty and clayey have been used frequently to describe the consistency of the typical celiac stool, which is generally unformed but not watery. Many physicians have added that the stool appears frothy and greasy, while all agree that usually it is decidedly pale, although different shades, ranging from pale cream to light greenish yellow, have been ascribed to it. (...) stools are more frequent than normal, but there is wide variation in frequency  - from one to 10 daily, with 4 or 5 daily being quite common. The greasy appearance is also subject  to variation. Sometimes it is so obviously fatty that droplets of oil are clearly visible to the naked eye. The stool is often mucoid but not always. (...) Constipation is rare (...) The recurrence of diarrhea after intervals of normal or almost normal stools is so characteristic that it may be considered one of the most valuable diagnostic points available at this time."

As far I know, that is dead on. When I had a relapse, it would always start by having progressively lighter colored stools, then looser, then I would start to see that characteristic reflexion of fat in the surface of the water, like car oil on a puddle. And the smell, oh the smell!

I would just like to note that they mention that the greasiness (steatorrhoea) is due to impaired absorption, the fats are properly digested, and so, that there is no need to exclude fats from the diet. However, "the addition of sugar led to an immediate increase in number of stools".  

My mother always told me to trust old doctors. I now start to see why.