Celiac Testing with Dairy & Soya Allergy

[rowanie]

Hi everyone, this is my first ever post, so I'm exciting to get to know people here. A bit of background about me...

I’ve had problems for around 20 years with things like bloating, stomach doing the Mexican wave, excessive wind, abdominal pain, migraines up to 5 days a week, balance problems, feeling/being sick, depressive, anxiety, acne, itchy blister like rash on feet, hands and face, heartburn, joint paint in hips and back so bad I often can’t stand up for long or can’t stand up straight. I have tingles in my hands and feet and legs. I have a shooting nerve pain from my head/neck down my arm. Heart goes fast & heart palpitations, I can swell up. Struggle breathing. Constipation and diarrhoea. Mucus in stools. Tinnitus.  Stomach aches. Brain fog. Tired. The list goes on. 

Last year I couldn’t take anymore and as I was fed up with feeling so sick all the time. The NHS told me I was lactose intolerant, but I never felt better, so I paid to see a Dietitian, who is incredible. She told me to give up dairy and soya and I instantly started feeling better. She said I had an dairy and soya allergy. 

Fast forward 10 months and I still have the underlying problems with wind, bad abdominal pain, bloating, acne, blistery itchy rashes, (my face was completely out of control with this strange red/blistery rash) migraines just ones a week (I feel I am blessed in comparison to what I was), heartburn, stomach aches, stomach moves up and down, balance problems, tingles in my hands and feet, stabbing nerve pain from neck to arm, tinnitus, joint problems, mucus, depression, heart palpitations.

I have recently been told I have SIBO (small intestine bacteria overgrowth). 

I have been on the low FODMAP fruit and veg diet, which did nothing. By pure accident I took out wheat from my diet and suddenly realised I was feeling better, so my dietitian told me to go gluten free, which I did for 5 weeks. My skin had never been so clear. My face looked different. Stomach stopped bloating, wind improved, back ache/hip joints improved, but still not great, depression lifted, heart palpitations gone, felt so energetic and happy, heart burn and balance problems gone. 

I then decided to go back on wheat as I want to get tested for celiac, which I am on the waiting list for. I shouldn’t have come off it! Going back on gluten, my skins rubbish again, etc etc etc. Everything has come back, but my stomach pain isn’t as bad as it was. I am also being tested for inflammatory bowel disease as I have blood in my stools at times along with the mucus. I think that will be negative though. 

My question is, my symptoms were made even worse when I was on dairy and soya, in fact, I am terrified of them. My dietitian thinks that the dairy and soya allergy and SIBO could be caused by gluten. Does anyone know that to be tested if I should really have dairy and soya in my diet? I have seen lots of people with gluten problems, also have dairy problems, but I’m guessing most of these people worked this out after they cut out gluten. Just wondered if anyone else had experience with this?

Also, with my symptoms, would you bother finding out if you were celiac as an endoscopy seems a lot to go through to find out all is fine. 

Really appreciate any replies. 

Thanks 

[rehh05]

No, you don’t need to be eating dairy and soy to be tested for celiac. Yes, damage from celiac can cause lactose intolerance... the part of the villi in the small intestines that digests milk is the top part and it is the part that shows the damage. Yes, there are lots of people with celiac who have other food intolerances. Yes, in my opinion, it is worth getting a diagnosis. It is too bad you didn’t have the blood tests run while you were eating gluten... perhaps you could do them as a part of your work up after eating it again for a few weeks. Yes, and endoscopy is worth it to see if there is damage... make sure that several biopsies are taken. 

I think, sometimes, that the only reason my dietary needs are respected in different places like work, and in hospitals has been because I have a documented diagnosis. 

Also, have your vitamin and mineral levels checked by blood test. Some of your problems could be related to deficiencies.

 

[cyclinglady]

Welcome!  

Only you can decide if it is worth pursuing a celiac disease diagnosis.  A gluten challenge for 8 to 12 weeks (antibodies testing) can be brutal.  The time is much less for an endoscopy (2 to 4 weeks).  Benefits?  Good to know if you have kids, siblings or parents who have mysterious symptoms or none at all.  Knowing that you have one autoimmune disorder in your health chart, may help your doctors identify other autoimmune disorders (common) in the future.  

You do not need to be on soy or dairy for celiac disease testing.  It may make the gluten challenge less brutal.  Often those intolerances resolve with intestinal healing if you actually have celiac disease.  SIBO with treatment can also resolve.  

Research and then you will be able to make a good decision.  You are so close to completing a challenge.  Please consider getting tested for celiac disease.  

[Ennis-TX]

The dairy intolerance is an issue with damaged villi as mentioned above, for some it goes away after the heal or is life long for others. Soy is a problem for many people and for me, I still can not have direct soy while soy lectin does nothing to me. But I have rotating list over the years of no foods, although many have gone away. When your intestines are damaged getting SIBO or Candida is common I dealt with intestinal candida years ago.

The blood and mucus in stools, if red it is from the large intestines and probably a different issue from celiac like Ulcerative Colitis (Common triggers are also gluten, soy, dairy, in some cases coffee, chocolate, spices, fructose/glucose.)   Crohn's, Diverticulitis could also be the cause for blood. These would show up in a Colonoscopy so you should probably talk to a GI and mention this also and see about getting both scopes done while under. Celiac could have led to secondary issues also. 
Darker, tar looking stools are a sign of bleeding in the upper GI tract.

[rowanie]

Wow I am so glad of your responses. I have had so many questions going around my head and it's taken so long to have the confidence to actually post. Thank you so much for you amazing replies. I am so glad you don't think I need to go back on dairy and soya, I can't even make my kids cheese sandwiches as it makes me ill, so the thought of eating it terrifies me.

rehh05, I am sure you are right, having an official diagnoses will make people respect the fact that you can't touch gluten. So there is a very good reason to know for sure. My only problem is that I could be waiting between 4-8 months to have an endoscopy. So it's going to be a long wait.

Cyclinglady, one of the reasons I decided to go back on gluten is for my family. My brother has problems I have always been aware. My mum has always had issues with going to the toilet way more than normal and I've always noticed her stools float and are a different colour. She has no idea I've noticed and I don't talk about it. Me and my brother have always joked that 'it is in the family'!! Thinking it was just the way we are, but I just couldn't take any more. Now I know, it's not normal to feel this way. I need to know for my kids too. My 4 year old has things going on that concern me, so I need to rule it out as much as anything and know I've done my bit. I notice you have osteoporosis listed in your diagnose list. I am going for an x-ray tomorrow, I think to check for bone density. I have had terrible issues with my hips joints/back for around 2 years. I already have knee problems and my neck isn't perfect. I don't think it will flag anything up on the x-ray, but every day I struggle with simple things like putting on my knickers and socks. I find it hard to stand up straight at times. I've found myself having to lie down because I can't stand for long. This improved when I came off gluten. I now feel that I may have had inflammation, which died down. I've been left with pain in my hips and back, mainly my left hip. Do you get pain with osteoporosis? I've read the pain is there only if you've done damage. I am only 39, so I am hoping this pain will at some point go as I feel like my granny! It's a little embarrassing at times.

Ennis_TX, thanks for your great advice. The blood has been a recent thing, so your advice is well received as I have no idea about what's going on. I will make sure I speak to the doctors about this. It's been a really difficult journey with the doctors. I was referred a year and half ago, but I am still battling with getting help. Hence why I've ended up seeing someone outside the doctors, who is very well respected in her profession. Without her, I just don't know what I would have done. She's worth every penny.

Thanks again for all your replies.