Still sick 1 year after diagnosis

[Ryan7194]

Hi all

I have been diagnosed for about a year now and still suffering from terrible symptoms that seem to be getting worse than better over the past month or two.

My story was that I got a virus about 5 years ago which started ongoing stomach issues. All the tests were performed (including celiac and endoscopy) with no result so in the end I was given that useless IBS diagnosis.

After 4 years I went to a new specialist who re-did all my tests. I have both the DQ2 and DQ8 genotypes, my celiac serology tests were all either double or up to 6 times what they should have been (TT Iga was 98 and lab reference is <15) and an endoscopy showed Marsh 3b damage to my intestines. I'm certain of my celiac diagnosis because of these results.

Since then I have gone gluten free and have seen little improvement. The first couple of months were rough with gluten withdrawal but they seemed to sort out after a while. I had a couple of months of feeling about 20% better but that has come crashing down over the past month or so. I have constant stomach pain, nausea feeling and altered C and D. I'm extremely fatigued all the time, my muscles ache and I'm finding my ability to think properly severally changing over the last couple of months (brain fog?). Even stringing a sentence together is sometimes hard for me to do at the moment.

I have removed soy, dairy and nuts from my diet with no change. I have tried pro-biotics and things like Metamucil without change. Tried the FODMAP diet

My recent blood test results show my celiac antibodies back down to the normal range, so I think as far as removing gluten from the diet I have been able to do that. I'm very bland with my diet, and basically never eat out as I'm to scared of feeling unwell. I have had all my vitamins, full blood count, thyroid, diabetes checked via blood and everything is normal. I've had a colonoscopy done last year when I was diagnosed with celiac which is clear.

I live in a gluten free house and know that there is no CC issues with what I eat.

I'm struggling to get through days at work, my life feels like the only time I am safe is if i'm home on the couch or in bed.

I'm at a loss with what to do anymore. I think there is something else making me sick along with celiac but just have no idea what it is. All the test I do come back normal.

[cyclinglady]

Ryan, welcome back!  Sorry to here that you are still sick.  I looked back at your earlier posts and found that it has only been seven months.  You were pretty sick back in June.  Misdiagnosed for four years!  ?  it can take a long time to heal from celiac disease.  Your antibodies are down, so you are doing everything right.  ?

I was a Marsh Stage IIIB too.  Anemia was my main symptom -- no tummy issues.   It took me a year to feel decent and another to hit the well stage.  Perhaps you need more time.

I was glutened in July (still do not know the gluten source).  What I discovered is that my autoimmune response to gluten has changed.  This time I had all the classic intestinal symptoms.    I was still sick a month later.  My GI suspected SIBO, but I just asked for an antibodies test and sure enough, it was higher than  when I was diagnosed.  It took another month before I could eat without pain and another to get back dairy.  Three months to heal from a small glutening compared to the years I was wolfing down copious amounts of gluten on a daily basis and just getting anemic.

I am sharing this with you because getting glutened is not like consuming dairy when you are lactose intolerant or have a mild allergy to some food.   Those symptoms typically last for a few hours or days.  But celiac disease is an autoimmune response that is triggered by gluten.  It can flare-up for days for some or months for others.  

So, maybe you need more time to heal,  maybe SIBO should be ruled out, or maybe there is something else going on beyond celiac disease.  What does your GI think?  Let's hope for more suggestions.  Hang in there!  

 

[captaincrab55]

When I was diagnosed, it cost me a bit over a $1000 just to make my kitchen gluten-free.     It took another 4 years to zero in on other food issues with  nuts, casein/dairy, corn and strawberries.    Are you taking any generic meds?      Corn starch is used in some meds and the wax coating on supermarket vegetables is also made from corn.        So many foods are sweetened with fructose or corn sugar.      Try eliminating corn and see how you feel.

 

[Posterboy]

ryan7194,

I agree with cycylinglday I noted/noticed the same thing.  See my comments to liz21 topic " 7 year, 5 years gluten free . . . still having problems" and my profile if you want to know more about the posterboy.

That said I wanted to share my experience with Chronic Fatigue that presented before my Celiac diagnosis.  Triggered by not being able to absorb critical nutrients like Magnesium.

Being a Celiac your ability to absorb critical nutrients (as I sure you are aware by now) is compromised and limited in many respects.

I used to sleep 12 hours a day and still I was wore out until .  . . I found out about the Miracle of Magnesium!  There is a book call just that "The Magnesium Miracle" that talk's about all the benefit's one gets from taking Magnesium.  YOu dont' need to read the book to get the benefits just find the right form is the key.

Find a Magnesium CITRATE take it with each meal and at bedtime and you will be amazed about how much your energy levels increase.

If yous start having vivid dreams after a couple of weeks and waking up before the alarm clock goes off it is the Magnesium working. Friends at work swear by it for cramps and charlie horse's who have tried and found a citrate form.  They no longer wake up in the night and sleep soundly. 

Magnesium should really help the fatigue you have been experiencing or at  least it did mine.  I hope you find out what is causing your flareups. 

Find a CITRATE not oxide then your body will really respond.

*****  This is not medical advice.

Good luck on your journey.  If it don't work in the first couple of  weeks (produce restful dreams and help fatigue) look at the label to make sure you have gotten a 100% Citrate form.

Would Love to hear if it helps your fatigue either way good luck.

Posterboy,

[Posterboy]

ryan1794,

Have you considered the medicine's you are taking.  Some medicines and antibiotics can give you "sprue like symptom's" ie mimic Celiac disease's often alternating with the C and D you describe.  But with your anti-bodies test presumably still being low Gluten is not the trigger in this case but the medicine you might be taking could be.

See this link on glutino that is a couple years old now but describes it very well. 

Open Original Shared Link

And see Open Original Shared Link for more on how Benicar can cause the symptom's you describe if you are taking it for high blood pressure FYI and your doctor's if it has not been mentioned to him before.

Also consider changing any pain medicine you are taking to another NSAID or possibly a coated aspirin instead of a Ibuprofen branded (Advil or Motrin) pain medicine and see if it helps your GI problems.

According to the Open Original Shared Link it might  also cause some of the symptom's you are describing.

I do a lot of nutrition research myself and I don't think this fact is well known ( and why would they want it known) or people would probably stop taking it or at least (Celiacs's would) find another medicine substitute that would work with out causing unknown (to most) GI distress!

I know I did not know about til about a month ago.  Share if it helps is all I ask.

Search for the Posteboy on Celiac.com to see all my comments and if you find this information helpful share.  Pay it forward and pass it on.

2 Timothy 2:7

I  hope this is helpful.

Posterboy,

 

 

 

 

[Ryan7194]

Thanks for your comments.

I'm seeing my GI doc again in 2 weeks and SIBO was on my list to ask her about. I've never been tested for it before so i'm keen to get it done just to know one way or another.

As far as my medication not being gluten free, I basically take no medication at all. Just probiotics (they are stamped as being gluten free) and metamucil capsules.

I just got some results back from a stool sample today that show I have blastocystis species. My GP says that its one of those parisites where there is some differing opinion between doctors as to whether it actually causes symptoms or is harmless in humans. His opinion was to see my GI dr about it before knocking myself around with multiple types of antibiotics.

Has anyone else heard or know much about blastocystis and possible symptoms?

I think everyone is different and you get to know how your body reacts to certain foods etc. What i've been feeling the past couple months doesn't feel to me like it would be from glutening or food intolerance. I'm waking up at about 5am everymorning already with stomach pain, nausea and bloating before I even eat anything. The foods i'm eating now are exactly the same as what I was eating before my last turn for the worse.

 

[Posterboy]

Ryan7194,

Timeline and history are important with diagnosing someone in any condition.

I had similar symptom's many years ago now when trying Psyillium fiber (Metamucil) for regularity.  It made me anything but regular!  Did your downhill slide start soon after you started the Pysillium?

If so you could be having an allergic reaction and have not put 2+2 together until you have stopped to think about it.  Open Original Shared Link

You do not have to trouble swallowing to have an allergic reaction to Pysillium (Metabmucil) I did so I stopped promptly but if these thing like nausea, stomach problems etc more have gone on for more than 2 weeks and they have for more than 2 months (according to you) I suggest you stop the Pysillium immediately.

**************  This is not medical advice and should not be considered such but elimination diets are often a safe and effective way to find what your body is reacting to. This only has been my personal experience and why I am able to offer personal advice and feedback base on my own experiences and study.

The bloating seems an obvious carbohydrate problem to me.  See Chris Kresser who know's alot about why we often feel bloated.  Carbs are usually the trigger for bloating according to him.  Consider going low carb to help the bloating if stopping Metamucil does not help.  It usually helps people who are having heartburn problems to remove their triggers and according to Chris Kresser carbs are the biggest offenders.

Open Original Shared Link

This the middle article in a 3 part series that is very informative you probably should read them all.

Also see my archived blog entry.  Make sure you find the Niacinamide form of Vitamin B3 or Slo-Niacin because straight up Niacin will cause flushing in most people in high doses of greater than 100mg but can be titrated up in 100mg doses if Niacinamide is not easy to find in your area.  Most doctor's who prescribe it (Niacin) prescribe it for cholesterol support tell you to take it a night.  If you do take Niacin because you have trouble finding NIACINAMIDE be aware it will cause flushing for 3 or 4 days until your histamine reserve's are flushed out.  It is not uncommon to wake up the first night from hives with Niacin in doses above 100mg but this is not a problem for the Niacin(amide) form.  Being a water soluble vitamin 3/day works thrice as fast as once a day. Eating it with food provides a easy way to remember to take both it (Niacinamide  and the Magnesium Citrate) I mentioned in an earlier post.   You will now it (Niacinamide) is working when you begin BURPING for the first time in years (not soda or beer, ie carbonated drinks) see my celiac.com blog entry below for more information.

I think these two things will really help.  See my previous comment's about the Magnesium Citrate for Fatigue.  You can also check out the website in my profile if you want to read more about my history as I often say "To Educate is to Free".

Good luck on your journey, and let us know if it was the Metamucil and if the Niacinamide helped in 3 to 4 months (causing burping) the time is usually takes to see a significant improvement in stomach issues.  The Magnesium Citrate (low energy) will work in 3 to 4 weeks if the fatigue is due to being low in Magnesium.

It can't hurt as they say.  It is just one Vitamin and one Mineral.

You may want to wait until you get your SIBO results before beginning these vitamins/nutrients so as not to interview with any tests you might have to perform for your doctor.  But personally this is just me talking one Sufferer to another Sufferer I would stop the Metamucil YESTERDAY as they say.  If it is Metamucil causing a a relapse then the affect should be almost an immediate improvement in 2 weeks to a month or less.

******** Again let me say for emphasis this not Medical advice.  Please let your doctor know of any changes in your routine including stopping the Metamucil so he can include it in your timeline for a proper diagnosis.

Also consider the STRESS you might be under it is not uncommon for Stress to make us sick and we often don't consider it at the time.  Think High Blood pressure from too much stress!

2 Timothy 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy,

 

 

 

[Ginger1012]

Going through the same thing right now. Feel so sick writing this a 12am. Any tips?

[cyclinglady]

1 hour ago, Ginger1012 said:

Going through the same thing right now. Feel so sick writing this a 12am. Any tips?

I am sorry that you are sick.  It has been three months which is a good time to follow-up with your GI and get your antibodies checked.  They should be on a downward trend.  If not, look to your diet.  Gluten has a habit of sneaking in!  Your issues might not be celiac-frelatd at all.  Best to see your doctor.  

In the meantime, rest, stay hydrated and eat easy-to-digest foods.  I hope you feel better soon.