Help! I'm very confused!

My symptoms started in October 2010 with big armpit lumps (very painful and warm) in both armpits and Achy joints. (During this period I didn’t experience weight loss or headaches)

- Armpit lumps recurrent for this period on/off, except for the last three months.
- Recurrent abdominal pain and/or discomfort (Mostly in the lower right side, maybe the illeocecal junction and the cecum and discomfort in the bladder area, rarely in the left side and back, also during the night)
- Bloating and Abdominal distension
- Fatigue (Gone with a gluten/dairy diet after a few days)
- Achy joints (sometimes muscular, mostly joints)
- Paresthesia with pain, in any part of the body, looks gone after starting PPIs medication, I think it was more acute when consuming caffeine drinks.
- Dizziness/brain fog, this went to maximum in two crisis when I couldn't even lay down or sleep, not even concentrate or eat anything, sick feeling, the only relieve was to walk.
- Diarrhea (food not digested and floating stool) and constipation during crisis, not very frequent I could guess that might be related to lactose, but not for sure.
- Ulcers in the tongue (mostly when I had a crisis) and sporadic pain in the ears.
- Higher than normal liver readings observed for as far as I can remember.

The symptoms that is more acute and intolerable is the last one dizziness and sick feeling, it comes mostly before passing stool but can last for the day or several days, to a degree that I cannot even stay in a chair having lunch or dinner with other people or even sleep, I need to go and walk.

I had some cases of vertigos, not that so frequently, sick feeling and dizziness appeared around one year ago, there are periods when it happens and period when it doesn't happen, during the last 6 months I had several mild crisis and two strong crisis when I went to the hospital very dizzy, I couldn't even sit down and I had high blood pressure at that time (I didn't get high blood pressure again).

I followed a gluten/dairy diet for some weeks and I got a very good improvement and I felt full of energy instead of constant fatigue.


Tests Done:

- IGS: igA: 1 agG: 2 agE: 9 (All very low and normal)

- Vitamines: Vitamine D 29 (low but normal), Copper a bit low

- Thyroid: All in the range but for TSH it was 3.2 (The range here is 0.3 - 4.2)

- Ultrasound scan: Seen a inflammation in the terminal ileum

- Stool Test, all normal except for Helicobacter P

- Bloodtests: All normal except monocytes a but high, and high readings of liver enzimes (95 first, after 75 and after 79 range 0-55), also triglicerids a but high.

- Colonoscopy: All Normal

- Gastroscopy: Severe erosion with ulcers and erythem in duodenus and stomach, early metaplasia without displesia seen, Helicobacter found.

- Biopsy of Stomach and Doudenus, one piece each (only), count <30% (celiac ruled out), lactose intolerance found.

Medication: Taking Vitamin D, finished triple therapy for helicobacter, taking probiotics and PPIs to heal the ulcers.

The doctor said that I can eat everything, nothing else found, the liver to be investigated, should I rule out celiac? Could it be Chrons?

I did some gluten challenge on my own,after some time without gluten, I felt a bit sick the next not too much, I continued taking gluten, no major sympthoms, a bit of pain in the ilecum and a low energy, but nothing else, I'm not sure if I should do home made tests, but I visited many doctors with no luck, I don't know what else to do, I'm thinking in NCGS or in taking a genetic test for celiac.

My day to day symthoms are mild, very mild, is more like low energy and very mild joint pain, but the crisis (I had 2) were very bad, a lot of pain in the illecum and other parts of the intestine, couldn't sleep, felt very dizzy and weak, couldn't eat or even rest in the sofa, those two crisis happened in the last 6 months, with up and downs the weeks after.

It looks like gluten-free diet makes a difference but I tried only once for a few weeks, need to confirm trying again, any ideas?

Could just be all related to Helicobacter? (humm liver and ilecum pain don't look like that)

I need to restest for Helicobacter in a couple of weeks after I finish my PPIs.

Thanks Sweets7, I tried many doctors, most of them say durectly is Irritable Colon and they don't care anymore.

I'm trying another one next week, specialist in Chrons.

I noticed that without gluten, the terminal illeum pain went away, it might be just chance.

I'm focusing now on killing my HP and healing my tummy, also the liver enzymes need to be explained.

Sores in the mouth might be because of HP, diarrea is quite uncommon but in my crisis happens.

Bloating is quite related to dairy, I've been diagnosed lacose intolerant.

I've been dairy free for some weeks already.

Went to the doctor today, asked about the illeon terminal, he told me that he is an expert in Crohns, and it's not Cronhs and he checked for that, he insisted that is IBS and I should try 2 months of gluten free diet to see if I have Non Celiac Gluten Sensitivity and re-test my liver.

Some more details:
- Pain in my joints started 2.5 years ago, is very very mild and some times muscular as well, there are months or remission.
- There is no blood in my stools (also tested for hidden blood).
- Diahrrea is mild and not very common, but in the crisis (3 crisis at the moment in the last year, pain in the lower stomach started one year ago) gets worse and also constipation.
- Ulcers in the mouth happened four or five times in the last 2.5 years.
- Fatigue at the moment looks like disappears completely and I get full of energy with a gluten free diet, still need to confirm, I'm just suspicious because I tried a couple of times a couple of weeks each time to go gluten free, and my feeling was that.

Also autoimmune liver issues have been ruled out (ANA, SMA etc...)

I didn't ask about TSH, I'll do that next time, in the next exam in two months I'll ask for TSH as well and if it is still over 2.5 I'll insist.

It looks to me that IBS is such a easy diagnose, but.... it might be, right?

Anyway I'll go for celiac genetic test and for a second opinion from another GI.

I'm eating fruits, nuts, salads, meat, fish, rice and some gluten-free products... I still need to give a go to cheese/yougurt etc... I'll leave that for the future, at the moment I want to stick to a clean diet to see if my sympthoms dissapear, the sick feeling, fatigue and dizziness went away, lets see with the intestine pain (very mild now) and joints pain (also very mild), I'm quite regular with stool, but I still have some gas.

I guess that I'll have to heal the leaky gut with time and the other symthoms will decrease, hopefully...

Also the genetic test for celiac might guve me some tips... It is difficult to be gluten-free strict when you are not diagnosed.

It is also important to see that the liver readings go down with the gluten free diet, if that is not the case the doctor said that we'll go for liver biopsy... hummm

Thanks Razzle, I don't live in US, I live in middle east at the moment, I'll have to check if I can send the results on time to enterolab, I've seen that their tests are not scientifically approved at least in the medical community.

I'm suspicious that I have intestine permeability mainly because of my symptoms, I'm going to try to reduce my intake of aliments that can cause histamine to see if that is reverted in a few weeks/months at least to be sure that I'm in the right way, I guess that most of the people diagnosed with IBS they have also permeability and that can happen to anyone, not only genetically predisposed people (those ones they suffer it more, of course):

http://www.ncbi.nlm.nih.gov/pubmed/16635908

I understand that once the permeability has been reversed it will be easier to re-introduce new foods in the diet.

Hi Razzle, thanks for the advise, I'm in UAE, I'll try to find frankincense, I'm also looking to try anatabloc, but I couldn't find it yet.

I found a good GI in Cleveland clinic, I'm quite confident with this one, he ruled out Cronhs, and he is thinking of celiac/GS, he wants to do a one month gluten challenge once my Helicobacter is confirmed erradicated, after the challenge we'll go for blood test and endoscopy/biopsy again... sounds good to me!

Yesterday I took some gluten free pizza, and today I'm a bit sick, I think that I'm also dairy intolerant (chesse was lactose free), but I don't have any D or stomach symptomps also no stomach pain, only malaise, feeling sick.

Hi Kim123, thanks for the reply, that's what I read in many websites, but three doctors considered normal, also I had another TSH test 6 months ago and it was 2.0, let's see in a few months... the T3 and T4 readings are normal readings.

Thanks, I will keep an eye on my TSH and ask for a new test in 3-4 months just in case.

Thanks pelagicDancer,

The genetic test won't tell me much really, but is good to know, at least to see if I'm more in the NCGS side or Celiac side and it is worth to try again the biopsy.

I know that gluten makes me react, it is mostly sick feeling and brain fog, lactose will give me D, not sure about casein.

The problem is that because of my job I travel quite a lot, stay in hotels etc... and it is very difficult to avoid small amounts of gluten, I can skip obvious dishes that contain gluten, but for others is really difficult.

I'm not sure if being NCGS will be easier and I won't have issues with traces and cross-contamination, I might be more tolerant, not sure, I've just started with the GFD, and I guess that I might become more sensitive with time.