No Relief: 4.5 Years and counting..

[Alok]

Hello Everyone,

This is my first post here and I am writing to seek help from experienced people here. I have been suffering for over 4 years now and still no where close to having a solution/ satisfactory diagnosis of my problem. My problems started in Mar 2012 with sudden diarrhea which would not go away for days. At first, I was given general antibiotics medication which would help bring down the frequency for some days and then it would come back. Since then it has been going on. I am giving a time line and the series of tests and procedures I have gone through. Would like opinion from experienced and experts here. I can send the scans and reports if required. Would really appreciate the help.

Male, Indian origin

Mar 2012 - onset of symptoms - multiple bouts diarrhea - spaced 3-4 weeks, bloating, weight loss (to start with I was 74 Kgs), GP managed with antibitocs and loperamide for months

Dec 2012 - consulted a GI doc towards end of 2012, Colonoscopy done - conclusion was "IBS" - was advised to manage stress. use Rifaximin and immodium

Jan 2013 - Aug 2013 kept moderately fine for 3-4 months ..again started getting frequent diarrhea + weight loss (was around 70 Kgs)

Oct 2013 - Consulted another doc, MD - stool and blood test - Ecoli and high Eosinophil Count, medication done for 5-6 months, montinored eosinophil from nov - Mar: always kept high.. came down but then again shot up in a month

Mar 2014 - Consulted another GI expert - Endoscopy and duodenal biopsy done - H Pylori and Unremarkable Villious pattern, (weight 68 Kgs) - On and Off diarrhea continued. Given: Ivermectin

July 2014 - again same doc - Blood test done: High Eosinophil count,  Colonoscopy and Ileum biopsy - preserved villous architecture, features of eosinophilic enteritis; Endoscopy  + duodenal biospy again - numerous H pylori bacteria, Preserved villous crypt ratio, features of eosinophilic enteritis > conclusion: I have eosinophilic enteritis. Started on Prednisolone (steroids)

Aug 2014 - 3-4 days of severe diarrhea> weight came down to 65 Kgs. Hospitalised for 3 days - continued on Prednisolonerios

Sep 2014 - After 10 days only again a serious bout of diarrhea - hospitalized again - put on IV fluid for 8 days - weight 59 Kgs. Colonoscopy + biopsy done: features of superimposed c. difficile colitis, non-specific mild colitis > c. difficle test came out negative. CT Enterolysis +Scan done: mesenteric lymphadenopathy > nothing wrong acc to docs. IgA deficiency found - diagnosed Celiac - advised for Gluten free diet.  

Sep 14 - May 16: continued gluten-free diet, gained weight upto 63 Kg in Jan 16, but then started losing again and came to 59 Kgs in May. No signficant diarrhea. Minor issues.

June 16 onwards: Again diarrhea started, still on gluten-free diet, weight lost - 54 Kgs now. hospitalised again under same GI doc - blood test - eosinophil high, CT Enterolysis done: Showing mucosal thickening in Jejunum and Ileum; Enteroscopy (going in jejunum) + jejunal biopsy - jejunal erosions + villous blunting, marked atrophic with V:C ratio of 0.5: 1 to 0:1. HttG blood test done - Came out negative> Conclusion : No gluten exposure (how?) + Refractory Celiac disease.

June - July - have been suffering from continuous diarrhea (goes off for 5-6 days and comes back, bloating, trappings in abdomen - waiting for I don't know what. On Rifaximin + Ivermectin + Codeine Sulphate (for diarrhea)

I am very depressed and have no clarity on what's going on. If it is celiac, why am I not doing better on gluten-free diet. If the villous damage is still there in small intestine, then why did I kept fine for Sep - May period? HTTG - negative now but was NOT taken in Sep when I was first diagnosed with celiac. Can we trust negative HTTG now and conclude that it has come down? I am 20 kgs down from my ideal weight and still going down. Have no clue what NOT to eat to stop this. Why is eosinophil always high. Can any of you expert help me to put my case to docs in other countries?

With lots of hope,

Alok

 

 

 

 

 

[cyclinglady]

Awok,

Welcome to the forum.  Have you considered trace gluten?  Here is a study on the topic:

Open Original Shared Link

It could explain why you felt good for a while.  I personally was glutened badly last summer.  I have no idea what got me.  I suspect either a prescription medication or one gluten free product (not certified).  I ended up on a whole foods diet and avoided even certified processed gluten-free foods including grains until I was healed (three to six months).  

[Fundog]

High eosinophils can also indicate an allergic reaction, whether environmental or food caused.  A lot of people with celiac disease develop additional food allergies besides not being able to have gluten.  Common food allergens are soy, eggs, corn, dairy, nuts, and seafood.  Maybe see an allergist?

[cyclinglady]

26 minutes ago, Fundog said:

High eosinophils can also indicate an allergic reaction, whether environmental or food caused.  A lot of people with celiac disease develop additional food allergies besides not being able to have gluten.  Common food allergens are soy, eggs, corn, dairy, nuts, and seafood.  Maybe see an allergist?

Great point.  EoE!  

Open Original Shared Link

[Alok]

11 hours ago, cyclinglady said:

 

 

Thank you for going through my long post and responding. I have been both dairy and gluten-free free for 10 months now.

Yes, even I was worried about other food allergies. I mentioned it to my GI doc and asked if I need food allergy test to eliminate other allergens. He said, food allergy tests give a lot of false positives and are not accurate. He said: not everything is because of food allergy and it's refractory celiac which is causing issues as the jejunum biopsy, done recently, is showing villous flattening.

My doubt:

1. If I have so much damage in my small intestine (villous flattening) then how was I keeping fine for 6-7 months ( eating eggs, soy, rice and meat) - was constantly losing weight though - but was able to work out regularly - not much fatigue.

2. If it is other food allergens ( out of mentioned allergens, I take eggs, soy chunks, almonds only) why does it happen only few times and not always - I keep well for 7-8 days and then fall sick again - this without any change in diet.

 

[Alok]

11 hours ago, cyclinglady said:

Awok,

Welcome to the forum.  Have you considered trace gluten?  Here is a study on the topic:

Open Original Shared Link

It could explain why you felt good for a while.  I personally was glutened badly last summer.  I have no idea what got me.  I suspect either a prescription medication or one gluten free product (not certified).  I ended up on a whole foods diet and avoided even certified processed gluten-free foods including grains until I was healed (three to six months).  

Thanks a lot for your advice and the link. I will surely check upon GCED. But, doesn't a negative HTTG (can't do IgA ttg as IgA deficiency) result mean that I am not exposed to gluten ? 

[frieze]

I_would_widen_the_search_to_your_whole_environment.....Carefully_consider_what_else_was_different_when_you_felt_better.

[cyclinglady]

Freize is right, you need to think about your environment.   Based on that a study I posted for you, you will note that the patients who were diagnosed with refractory celiac disease and THOUGHT they were diet compliant found that they WERE NOT diet compliant.  How is this possible?  

This is way out there, but unless you are growing all your own food, you don't really know if it is gluten free.  In the US, we do have laws to help protect our food supplies (no perfect, but a start).    I can not speak for India.  For example, what about your soy?  It can be contaminated by the farmer as it is often rotated with wheat.  Here is an article by Jane Anderson who has celiac disease.  She is very strict as she has DH (celiac rash), but she cites Trisha Thompson who tests foods for gluton contamination, The gluten-free WatchDog (like Consumer reports).  She found that soy which is naturally gluten free, but can be cross contaminated by wheat:

Open Original Shared Link

so, start thinking about your food supply.

As far as a negative TTG IGA or TTG IGG?  I test negative to both.  Only the DGP IGA has ever been elevated in my blood tests (even repeats), yet I had a Marsh Stage IIIIB on my biopsy.  Have you had a DGP IGG?  (I do not see this in your posting).  

Open Original Shared Link

These additonal celiac tests might help you feel confident that you have celiac disease and not something else that is damaging your villi.  But remember, some  folks have celiac disease even with negative blood.  I am not IGA deficient, so this is an area I have not researched.  Not to mention that some celiac researchers do not think that the celiac  antibodies tests are good for diet compliancy.  

I wish I had better answers for you.  Try a grain free, whole foods diet of meats, fish, eggs, and vegetables for a while.  All food prepared by you.

Who cooks your food now?  Is your home gluten free?  Cross contamination at home?  Kissing a loved one.  We had a doctor with celiac disease who was getting glutened by her little children who were consuming gluten!  

[GFinDC]

Hi Alok,

I suggest not eating any soy.  Soy is one of the top 8 food allergens in the USA.  Soy has other things about it that are not helpful to us.  Plus it is often sprayed with pesticides that are not so great for people.  Maybe you can try some other food for a while?  Also it might help to wash all your vegetables before using them.

Just some ideas, I hope they help.

[Alok]

On 7/26/2016 at 5:18 AM, cyclinglady said:

Freize is right, you need to think about your environment.   Based on that a study I posted for you, you will note that the patients who were diagnosed with refractory celiac disease and THOUGHT they were diet compliant found that they WERE NOT diet compliant.  How is this possible?  

This is way out there, but unless you are growing all your own food, you don't really know if it is gluten free.  In the US, we do have laws to help protect our food supplies (no perfect, but a start).    I can not speak for India.  For example, what about your soy?  It can be contaminated by the farmer as it is often rotated with wheat.  Here is an article by Jane Anderson who has celiac disease.  She is very strict as she has DH (celiac rash), but she cites Trisha Thompson who tests foods for gluton contamination, The gluten-free WatchDog (like Consumer reports).  She found that soy which is naturally gluten free, but can be cross contaminated by wheat:

Open Original Shared Link

so, start thinking about your food supply.

As far as a negative TTG IGA or TTG IGG?  I test negative to both.  Only the DGP IGA has ever been elevated in my blood tests (even repeats), yet I had a Marsh Stage IIIIB on my biopsy.  Have you had a DGP IGG?  (I do not see this in your posting).  

Open Original Shared Link

These additonal celiac tests might help you feel confident that you have celiac disease and not something else that is damaging your villi.  But remember, some  folks have celiac disease even with negative blood.  I am not IGA deficient, so this is an area I have not researched.  Not to mention that some celiac researchers do not think that the celiac  antibodies tests are good for diet compliancy.  

I wish I had better answers for you.  Try a grain free, whole foods diet of meats, fish, eggs, and vegetables for a while.  All food prepared by you.

Who cooks your food now?  Is your home gluten free?  Cross contamination at home?  Kissing a loved one.  We had a doctor with celiac disease who was getting glutened by her little children who were consuming gluten!  

Hi , Thanks a lot for a detailed reply.

So, do you mean that I can never be sure that I am having a strictly gluten-free diet unless I leave all kind of cereals and soy? The food laws in India are not so strict, infact the awareness about celiac and gluten-free food is also very limited. It makes it all the more difficult to source gluten-free food items. I have been sticking to naturally gluten-free cereals like rice and other gluten-free labelled flours. 

Also, I never did a ttg IgA/ ttg IgG or DGP IgG. The only test I had last year was total IgA which proved I am IgA deficient and hence celiac. And the test I had last month was HTTG/ DGP Serum - which seems to prove if one has IgG or IgA antibodies in blood. Which came out negative. So is it possible that HTTG failed to identify gluten intake and I should do DGP IgG instead?

The jejunum biopsy done last month shows Marsh stage 3b and 3c. 

I have removed soy from food - been at least a month (was still getting symptoms last month) - Can egg be a culprit ? I eat eggs daily and was having them daily for the 7 month period when I was symptom free. But can it still be the culprit?

I have a domestic help at home who cooks for me. I live alone and hence no other gluten containing food items at my home.

If it is really refractory celiac and not any gluten contamination (I really hope I am not getting any hidden gluten), then what is the solution? Is there any hope?

Also, my doc said that the immunity of my intestines is very low (IgA def), so I am quite vulnerable to food infections etc. He is of the opinion that there could be a parallel case of me getting infected quite often and getting my gut troubled in the process. 

I really want a 3rd pair of eye to look into my case (reports and history). Is there a way I can consult a GI expert in US over this forum/ other websites where I can get some help and direction.

Thanks for reading through.

 

[Alok]

On 7/27/2016 at 10:09 PM, GFinDC said:

Hi Alok,

I suggest not eating any soy.  Soy is one of the top 8 food allergens in the USA.  Soy has other things about it that are not helpful to us.  Plus it is often sprayed with pesticides that are not so great for people.  Maybe you can try some other food for a while?  Also it might help to wash all your vegetables before using them.

Just some ideas, I hope they help.

Thank you ! I will surely take your advice. I have not been eating soy over a month now

[cyclinglady]

Just because you are IgA deficient, does not automatically give you a diagnosis of celiac disease.  It is just that if you are IgA deficient, you need different versions of the celiac disease blood tests.  

I eat eggs daily and do not have any issues, but each of us seem to have various food intolerances with dairy being the most common.  

I am not familiar with with the HTTG test.  I googled it and I found this:

Open Original Shared Link

It sounds like you had a saliva test instead of a blood serum test?  

Anyway, the tests for celiac disease include both IgG and IgA versions of these: 

Open Original Shared Link

You had the endoscopy and have damage that is consistent with celiac disease, but other things can cause damage to intestinal villi:

Open Original Shared Link

Did you read my links about cross contamination of grains?  It is possible.  Soy is often rotated or transported with wheat.  Did you read the report of trace gluten?  Those researchers recommend a grain free diet when refractory celiac disease is suspected.  Follow that diet before you or your doctor decides if you really have refractory celiac disease. 

Finally, are you sure your cook is using tools that have never been in contact with gluten.  This includes cutting boards, plastics, wooden spoons, etc.  Do you allow gluten in your house at all?  

[kareng]

Total IGA is not a test for Celiac.  

There are many celiac experts in India if you care to look for them.  The next International Celiac Disease Symposium will be held in India.

Open Original Shared Link

So, perhaps you do not even have Celiac.  Maybe you should look for something else?

[Alok]

On 8/2/2016 at 10:36 AM, cyclinglady said:

Just because you are IgA deficient, does not automatically give you a diagnosis of celiac disease.  It is just that if you are IgA deficient, you need different versions of the celiac disease blood tests.  

I eat eggs daily and do not have any issues, but each of us seem to have various food intolerances with dairy being the most common.  

I am not familiar with with the HTTG test.  I googled it and I found this:

Open Original Shared Link

It sounds like you had a saliva test instead of a blood serum test?  

Anyway, the tests for celiac disease include both IgG and IgA versions of these: 

Open Original Shared Link

You had the endoscopy and have damage that is consistent with celiac disease, but other things can cause damage to intestinal villi:

Open Original Shared Link

Did you read my links about cross contamination of grains?  It is possible.  Soy is often rotated or transported with wheat.  Did you read the report of trace gluten?  Those researchers recommend a grain free diet when refractory celiac disease is suspected.  Follow that diet before you or your doctor decides if you really have refractory celiac disease. 

Finally, are you sure your cook is using tools that have never been in contact with gluten.  This includes cutting boards, plastics, wooden spoons, etc.  Do you allow gluten in your house at all?  

Hi, Thanks for your reply again.

Yes, I understand that IgA deficiency does not conclude celiac - and this is what I was most frustrated about my diagnosis 11 months back. They did not see any villi damage in biopsy ( 3 biopsies - 2 duodenum and 1 Ileum) - There diagnosis was based on my symptoms + the fact that IgA deficient people have a higher chance of having celiac (as told by my GI doc) - So they asked me to start a gluten-free diet.

My recovery and absence of symptoms in first 8-9 months of starting gluten-free diet reinforced their diagnosis that I have celiac. After these 8 months, I got my symptoms back (was not eating outside at all in these 8 months), and I visited my GI again. This is when they did endoscopy and biopsy again - this time from small intestine - and biospy said refractory celiac disease ( Marsh 3b and 3c ).

I did HTTG/ DGP Serum test - which is a blood test - done to combinedly look for IgA and IgG antibodies. This is specifically useful in case of IgA deficient people as it covers both IgA and IgG.

Yes, I asked my GI doc about other reasons which can cause similar damage and he said "nothing else can cause this kind of damage - we have already mis-diagnosed it as eosinophilic enteritis once".

Yes, I went through the links you provided. Thanks. In terms of cereals & millets I am having only rice and sorghum as of now. I will try to eliminate them also.

To answer your last question, I do not allow gluten in any form in my house. I live alone so it helps. All my utensils, cutting boards, spoons etc are not cross used. I ask my cook to be extra cautious and wash her hands before cooking my meals - so I believe I am eating gluten-free ( can't be sure if there is hidden gluten in certain items which as labelled gluten-free).

 

 

 

[Alok]

On 8/2/2016 at 7:07 PM, kareng said:

Total IGA is not a test for Celiac.  

There are many celiac experts in India if you care to look for them.  The next International Celiac Disease Symposium will be held in India.

Open Original Shared Link

So, perhaps you do not even have Celiac.  Maybe you should look for something else?

As explained in an answer above, my celiac diagnosis was first based on symptoms and later this year it was finally found in biopsy that I have villous damage. Whether this damage indicates celiac or something else - I am as sure as my doctor is. That's why looking for some external help.

No, not many docs here in India know about Celiac, not even about gluten (have faced it with my General Physicians - when asked for gluten-free medications only). The fact that it took more than 4 years for a doc to come up with Celiac diagnosis proves this.

Thanks for sharing the link. I am excited that finally celiac is coming mainstream and there is a symposium planned in India. 

[cyclinglady]

Before I settled for a refractory celiac disease diagnosis, I would insist on a complete celiac blood panel.  Like I mentioned before, I tested positive to only the DGP IGA test.  Make sure (100%) that you do not have celiac antibodies.  If the complete panel is negative, you might assume that you are either diet compliant and/or something else (e.g. Food intolerance, parasite, etc -- see previous link to University of Chicago) is causing your symptoms. 

I would also note that if you strongly suspect celiac disease, look to grains (any) for cross contamination as many that are naturally gluten free often contain enough gluten to trigger a celiac flare-up.  Read this:

Open Original Shared Link

Make sure your grains are certified gluten free (I am not sure what is available or how well tested they are in India).  I would encourage only a diet of meats, fish, veggies and some fruit for a few weeks.  No seasonings.  

I hope this helps.  

 

[sugarsue]

Hello, I'm sorry for all you are going through!  I thought I would share that a friend of mine has a daughter with EoE and she had to have a feeding tube inserted and only ingest the formula for nutrition.  Over time, with one food at a time, they have been trying foods/spices she can tolerate to build up her ability to eat again.  She is much improved by this even though so drastic a measure.  Good luck to you!

 

[wetcat]

I had diarrhea, ibs, SIBO, and grain/gluten intolerance. I also have gluten ataxia. I treated the problems and changed my diet so that I didn't eat any grains. This helped, but I didn't get completely better. Then my doctor ran a stool analysis test from Genova Diagnostics and I tested positive for giardia and blastocystis infections. Even Mayo clinic had done a parasite check before and didn't find those infections! I took Alinia to treat the giardia and now my diarrhea is gone. Genova Diagnostics is more accurate than Mayo- that test saved my life!

[frieze]

giardia is not consistently present.  would have to do serial testing to catch, you were lucky the second time.

[wetcat]

Only the antigen test caught it, the giardia was not seen under microscope exam ever. There was another local lab who didn't see it or detect antigen, either. It's a tricky one to diagnose.

[Charli61]

My daughter has not been officially diagnosed Celiac, but she will be, it is just a time thing.  (I am and I know she is!) She also has come up with a severe systemic reaction to Sunflower anything... and there is sunflower oil/lecithin etc. in a lot of foods.  Even in 'Vegetable oil' there is allowed to be (I think) 14% before they have label it as containing.  Could you not do a food log?  Try to isolate a common denominator.  As I say for my daughter it was sunflower, very quickly after ingestion she is in the bathroom in tremendous pain...