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Update: I am feeling a little better and I am able to do more. I still feel sub par though and work only part time. In addition, constipation happens only rarely now.

 

Blood test in March:

 

IGA TTG = 12 (<7) - decreased from 15 in January

IGG = 7 (<7) - decreased from 11 in January

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Patience is, unfortunately, the key word.

Personally after a lot of trial and error I'm just keeping to basic food. I'm gluten-free since the beginning of December 2012 and I' also lactose-intolerant. I have almost eliminated coffee and tea. I'm eating much less than I used to and basically keep to some vegetables, lots of fruit, chicken, some red meat, some fish, rice, homemade gluten-free bread and muffins, gluten-free ham.

Drinking lots of water helps a lot.

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hiya funkflex, well I've been having flaxseed for the past couple of weeks and my tummy has felt relatively calm so i'm presuming thats the reason. Apart from Omega 3, 6 and b vits, it also contains magnesium which apparentely is good for constipation http://lowcarbdiets.about.com/od/whattoeat/a/flaxinfo.htm . (i actually have half the recommended amount of flaxseed and can tell a difference)

glad youre feeling better anyhow :)

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alesusy: I too eat homemade food, but as you say, it is a trial of patience. Have you felt any improvement? 

 

VeggieGal: I'll look into flax seeds. Constipation is mostly not a problem at the moment, the fatigue is what bothers me the most right now..

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I was diagnosed 2 years ago next month....I have suffered from constipation most of my adult life.  I have taken expensive digestive enzymes, different pro-biotics, fiber - tried so many things - nothing helped.   I was spending $100 a month on a natural probiotic and fiber capsules from my nearby apothocary store....with very mixed results.  I started taking Align probiotic - I saw an ad for it and bought it at Costco.   I had read that Align is the #1 gastroenterologist recommended probiotic for 4 years in a row.  I didn't know if it was hype or what but it is $45 for 3 months and I gave it a try.  I started taking Align 4 weeks ago and for the first time in many years I am not constipated and can absolutely count on normal bowel activity - it has changed my life.  Perhaps it might work for you too.  For $45 it is worth a try.

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Yes Funkflax, I did improve noticeably. My symptoms all tend to come back if eat gluten - not on purpose! - or if I eat something else which bothers me, because - that's where the patience comes in - my bowels are VERY sensitive and get very easily upset, not only with gluten or lactose but with spicy foods, coffee, tea, too much Coke, or simply too much food.

 

Whenever I have a bad day - which is fairly often, and it might be several days in a row, with brain fog, tension headaches, great fatigue and GI symptoms - I also feel very depressed and wonder if I'm sick with something else and/or whether I'll ever get out of this tunnel. It helps then to remember that it will pass... I'm trying to eat less, keep a food journal and to keep things very simple because that's what works best for me. I'm four months (almost) into gluten-free and it's still very early days. But yes, all in all, I did improve... I remember exactly how much every time I have a bad day!

 

The elusive quality of 'brain fog' and other non specific symptoms really makes it difficult to pinpoint what was wrong... when you're feeling ok.

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I too sometimes in the darkest of hours wonder if I'm sick with something else, and sometimes I too feel bad for days in a row. I think what we are going through is very much the same.  Funny how we humans tend to extrapolate from the present into the future, and how this generates worry. I read in your other post that your levels have gone down a lot since you were first diagnosed, just like mine have. This is a good sign and if this continues, things will probably only get better.

 

Nevertheless, we might in the back of our minds think "what if", because we're subconsciously imagining the future through the fog of our present active celiac disease. Myself I'm trying to remind myself that I need to focus when things are bad. I'm trying to focus my mind on what I need to do, and to prioritize hard on what to spend my precious energy, and not the least when to fight and when to relax.

 

I don't know about you, but often there's a lot of issues that come up on top of a disease that drags on like this, everything from money and work issues, to insurance, to finding legal assistance and rescuing the remnants of a social life. The world's miseries become all too evident when seen up close. Well, me I'm too busy navigating the waters to undertake in-depth studies of the reefs:)

 

I read in one of your other posts that you are 47. I suspect that you might have suffered from this a couple of years already due to ignorant GPs or whatever?? Well, chances are your preoccupations are valid, you never know. what helped calm me down a bit, was having tests done to rule things out (google "differential diagnosis"). With time I learned how to get through fast at the doctor's office:)

 

Happy Easter by the way!

 

Whenever I have a bad day - which is fairly often, and it might be several days in a row, with brain fog, tension headaches, great fatigue and GI symptoms - I also feel very depressed and wonder if I'm sick with something else and/or whether I'll ever get out of this tunnel. It helps then to remember that it will pass... 

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Try ditching all dairy.  I had constipation and dryness my entire life when eating dairy... now it's gone!  No constipation, no dryness, no brain fog etc. etc.  I did have a positive IgG test to Dairy two months ago... still working the toxins out of my system.

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BTW a lot of people think the lactose is the problem in dairy, but it is more likely to be Casein, which means you need to cut it all completely from the diet.  Tofu and other set forms of soya also contain added Casein so watch out for those.  It all comes down to protein chains getting in to the bloodstream that shouldn't be there... because of the damage to the gut lining.

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I only consume dairy free products, so I doubt that's the problem. Constipation has improved a lot. The problem is a general lack of energy, although it has improved over the last months.

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I see someone suggested removing soy from your diet and see how that goes. I know you only use dairy free products. soy is something that I cannot tolerate along with dairy and gluten. I got soyed over the weekend, totally my fault, pure stupidity, and I am still trying to recover. I am exhausted, can't drag myself out of bed, along with the intestinal problems it creates for me.

 

I teach at a gym, so I literally have to bring myself out to do this, and it's a good thing or I would stay in bed all day when this happens.

 

hope you figure it out soon and feel better!

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Update, now 6months+ into the diet: i am doing more, and even exercising some days. Still not working full days, but I'll probably start working 80 percent in a couple of weeks. Constipation more and more seldom an issue, what bothers me is fatigue, but not the least as much as it did.

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The ttg iga is still at 12 (<7), while igg is down to 4 (<7), 7 months into the diet. I still have my limits, I'm struck down with fatigue if I exercise too much or overdo things. 

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Hi Funkflex,

 

have you had your thyroid tested?  If you are hypothyroid it can cause fatigue.  You may also need to consider other food intolerances.  Sometimes they can cause a lot of symptoms themselves, even if they aren't gluten.

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I've already been tested for hypothyroidism. What food tolerances should I worry about and how do I notice them_

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I've already been tested for hypothyroidism. What food tolerances should I worry about and how do I notice them_

What was your TSH?  was the whole "cascade" done?  any antibodies?

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I've already been tested for hypothyroidism. What food tolerances should I worry about and how do I notice them_

Hi Funk,

 

An elimination diet is the best way to find food intolerances IMHO.  You reduce your diet to just a few foods that you consider to be safe for a week or two.  Then each week after that add one food every 3 days.  Drop any that cause reactions.  A good starting diet would be 5 foods, including some kind of meat, a veggie (possibly sweet potato, peas), salt, pepper.  No coffee, tea, or soda.  No vitamins or meds if you can stop them for a bit.  Everything that goes in your mouth needs to be tested.  The other way to do elimination diets is to remove one food group at a time.  See if symptoms improve and then either add back the food group if it is safe or remove another.  The problem with that method is you can have reactions to multiple foods going on.  So you could remove one problem but still have another causing similar symptoms in your diet.  And then it is not so easy to tell what is going on.

 

Some of the common food intolerances are any of the top 8 food allergens, nightshades, soy, dairy, corn, eggs, soy.etc.  But any food can cause symptoms.

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Frieze: They tested me for TSH, T3 and T4 various times, results were always within the normal range.

 

GFinDC: I was already tested for food allergies: Egg whites, cow milk, cod, wheat, peanuts and soy beans. All negative. 

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Frieze: They tested me for TSH, T3 and T4 various times, results were always within the normal range.

 

GFinDC: I was already tested for food allergies: Egg whites, cow milk, cod, wheat, peanuts and soy beans. All negative. 

 

Hi FF,

 

Food allergies are not the same as food intolerances.  Allergies are a different immune response.  The testing for allergies won't show intolerances.  Food tiintolerances are something we pretty much have to figure out ourselves.  There is very limited testing for them from doctors.  It is good to have the allergy test done, as it is sure possible to have both an allergy and an intolerance.  But they are different things.

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The best thing that has helped my fatigue is taking a bit B Complex daily. But I know too that I have an intolerance to something else in my diet, just started and elimination diet, I think it's yeast or soy. Elimination diet seems to be the only way to go to pin pointing the issue.

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The test you had for "glucose" could only of been a HgbA1c for that result and reference range. It reflects a level of glucose metabolism over 60 to 90 days.

I would be interested in knowing what your pituitary hormones are. TSH is one of those and without further information of the reference range or medications I couldn't say if that number is good or bad. TSH is often the first pituitary hormone to show dysfunction but it does not rule out a pituitary problem. Adrenal dysfunction could also explain some of your symptoms.

Some of the tests you mention are for screening. In other words most people with a problem will show changes reflected by those tests but not all. With continued significant symptoms, there should be deeper investigation into several areas.

A number of autoimmune conditions are associated with celiac. These are called comorbidities. There is also the possibility of a condition not usually associated with celiac.

The important factor is that you are still sick. Even though recovery after removing gluten can take some time and accidental glutening can happen, there should be a trend toward improvement. You should be asking about expectations or prognosis. You may have significant damage that will take time to overcome but unless there has been irreparable damage or there is another problem yet to be identified, improvement should continue.

Start by asking your doctor more questions about your specific situation and try to understand exactly where you are medically. That should give you a point from which to learn and understand. This can help you but can also help your doctor. Sometimes  when a patient asks this question the doctor has to step back and look at the big picture in order to answer. When they do, they often see things otherwise overlooked or unnoticed. 

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