Please help!! auto immune illness even w/ normal blood test results?

Posted by wonderwall12345 @wonderwall12345, Mar 10 1:29am

Hi everyone! I have joined this community in a desperate bid for answers or guidance that my doctors seem unwilling to give. I feel as though I am going crazy and am being made to feel like a drama queen for insisting things aren’t right.

For context: I am 32F. 5'8 / 173cm and 80-83 kg / 176-182 lbs. I am caucasian. All medication I take is included below. I drink 3-4 times per month. I do not smoke or use recreational drugs. I eat healthy but do not eliminate any particular food groups from my diet at present. I am British but live in Belgium currently.

Since I was a teenager I always had bad bloating and constipation which caused me discomfort but never impacted my health further. I grew up in an old house with black mould in some rooms, including my bedroom. I was told this could have impacted my health but was never given any further details on how to look into this.

**September 2022:** I had bad constipation (I didn’t go to the bathroom for nine days) and was hospitalised. They found I had mesenteric adenitis (which is apparently rare in adults) but no one ever explained what caused the constipation (or the mesenteric adenitis for that matter). They did take blood tests at the time and everything came back normal. This included tests for celiac, thyroid, lactose intolerance. (I have posted my four-page blood test results from September 2022 below - they were originally in French so I have run them through Google Translate in order to hopefully make them easier to understand).

**November 2022:** I had a colonoscopy - they said there was some inflammation in my bowel and I also had mesenteric panniculitis. The doctor said there was no treatment and I just had to wait for the pain in my stomach to stop, which it did in late December 2022. No one could tell me what was causing my bowel issues and constipation. I was advised to keep a food diary and try to assess if I was intolerant to anything, but the constipation seemed very random (I eat salads most days, but suddenly one day I would eat a salad and my stomach would bloat and I would become constipated).

**December 2022:** The stomach pain stopped, but then a few weeks later I developed a cough and chest infection that lasted over three months. Two rounds of antibiotics did nothing to resolve it. I had a chest x-ray which showed a little bit of irritation/inflammation but nothing more serious. I once again had standard blood tests, which came back normal. My doctor said it could have been the result of a weakened immune system due to the stomach illnesses mentioned above.

**Winter 2023:** On several occasions, I have caught a cold from my partner in recent months. He would be sick for a day or two, but it would knock me out for over a week and ALWAYS developed into a cough (even if my partner hadn’t had a cough). For the last 15 years, EVERY TIME I get a cold or normal seasonal sickness, my glands will swell up. Now, I have noticed that as well as my glands swelling up, I will ALWAYS develop a cough.

When I was with family over **Christmas 2023**, I was sick again with a bad cold and cough and also developed a rash around my eyes that felt like sun burn (photo below). This has happened several times since December 2023. There was no change in my skincare during this time.

**Other symptoms:**
-Always cold
-Digestive issues (constipated)
-Cannot lose weight - I am currently 80-82 kg and 173 cm (technically overweight). I aimed to lose weight, first eating 1600 calories per day, then 1400, now 1200 (balanced macros) and walked 10-15k steps per day. My weight DOES NOT shift.

-I have genital herpes, which flare up much more frequently than is normal. Because of this, my doctor put me on preventative treatment a few years ago which he said should get rid of it all together, but it resurfaced less than a month later. I am particularly susceptible around the time of my period. I currently take 800 mg of acyclovir whenever the herpes flares up (usually 1x per 1-2 months).

In the last few months I have noticed an increase in the following symptoms:
-fatigue
-body aches
-dizzy spells
-more painful period cramps and stomach pains
-puffy face

Note: many of these could be seasonal and linked to the colds I've had, but I thought they were worth mentioning just in case.

I am scheduled to see a doctor soon, but in the past, once my test results come back normal, they tend not to continue investigating, no matter what my symptoms continue to be.

Any guidance you can provide is greatly appreciated, I am completely lost and desperate for some advice that might help end this ordeal.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

wonderwall12345 | @wonderwall12345 | Mar 21 8:34am

In reply to @celia16 "That’s great news about getting some answers and your weight loss! Omg. Did you count calories..." + (show)

I did! I began the Fast800 diet that Michael Moseley wrote a book about. It took a few days to get used to but considering I was only eating 1000 calories before it wasn't the biggest adjustment and seems to have made a significant difference to my ability to lose weight!

I've been doing Fast800 combined with gluten free (intermittent fasting - eating window from 10-5ish), two teaspoons of ACV in water first thing in the morning, walking 10k steps per day and doing a few stretches/light toning exercises every morning, as well as making a big effort to dry brush and do some quick lymphatic massaging just to make sure I'm not getting swollen because of anything related to that! I have no idea which of the above is helping and which isn't, but I'm just going to keep doing it all just incase as it feels quite manageable at the moment!

lavendercottage | @lavendercottage | Mar 21 4:32pm

Herpes is basically a low-grade infection that lives in your body rent free. I have the other kind of herpes and they don’t really warn you enough about the symptoms that happen outside the “danger zone”

Sore throat, runny nose, swollen tongue or red spots inside your mouth, red or irritated skin and feeling cold can be herpes symptoms. Shivering or feeling overheated are common with any kind of stomach upset. In your case the diagnosis is the syndrome. You have a serious stomach condition that flares up when it feels like it. High five to that: I have non gluten reactive celiac disease. You don’t have elevated white blood cells so you’re probably not autoimmune but maybe…very unlucky?

Also you get sick with mundane illnesses, most autoimmune conditions are caused by an overactive immune system. We’re sick all the time, but hardly ever experience normal symptoms. I (autoimmune) feel the effects of a cold for 2 days. My spouse (normal) has the same cold for 10-12 days. But I feel like I have a flu every day. Except when I have one. I don’t know how else to explain that 😬😅

Rule out everything you know you have and were left with puffy face and inability to lose weight, and weird periods. I’m not a doctor, but…

Have the ob/gyn do an ultrasound in case it’s PCOS or fibroids, and get a stick test from an allergist or try an elimination diet to find out if you’re allergic to anything. Just in case it works, try anti-anxiety medication. You might just be hyper aware of your body because of anxiety. I’ve had a few panic attacks and they made everything feel incredibly loud, incredibly painful, and incredibly close.

I really hope things get better for you and that you’re able to figure this out.

celia16 | @celia16 | Mar 21 5:46pm

In reply to @wonderwall12345 "I did! I began the Fast800 diet that Michael Moseley wrote a book about. It took..." + (show)

@wonderwall12345 ,
I’m probably just doing 800 calories myself. I’ll check out Fast800. I have a doctor appointment tomorrow and I’m pretty sure I’ll come 1-2 pounds short of a personal goal I had. Oh well….even though it’s going to be rather chilly tomorrow, I’m planning on wearing shorts (bought a new pair today) and take off my shoes before stepping on the scales! Wearing slip on sandals to get them off and on quick. Lol I figure shorts weigh less than the pants. I sure hope I use the bathroom before my appointment. Lol

rosaarreola | @rosaarreola | Mar 22 1:29am

Have you been checked for crones disease? I have a family member that has many of your symptoms and his blood work was always negative until finally one doctor took an interest and found crones. I wish you luck.

wonderwall12345 | @wonderwall12345 | Mar 22 6:44am

In reply to @rosaarreola "Have you been checked for crones disease? I have a family member that has many of..." + (show)

Hi there! I've had a colonoscopy which came back clear for crones - the issue I face is I am living abroad (in Belgium) and some of my appointments are conducted in French so it is very difficult to ascertain what exactly is going on some of the time!

marye2 | @marye2 | Mar 23 8:32pm

In reply to @wonderwall12345 "Hi there! I've had a colonoscopy which came back clear for crones - the issue I..." + (show)

Does your phone have the capability to translate in real time? https://support.google.com/translate/answer/6350658?hl=en&co=GENIE.Platform%3DAndroid

marye2 | @marye2 | Mar 23 8:33pm

In reply to @celia16 "@wonderwall12345 , I’m probably just doing 800 calories myself. I’ll check out Fast800. I have a..." + (show)

I just wear the same clothes every time. ;o)

marye2 | @marye2 | Mar 23 8:46pm

I have Mixed Connective Tissue Disease, which is an overlap disease--similar to Lupus, including fibromyalgia (muscle aches) and various other symptoms. My auto immune is often diagnosed with an RNA/ANA panel, but sometimes people have the symptoms and not a high enough number for the diagnosis. I am currently dealing with a bad "stomach dumping" episode, including cramps and constipation but sometimes diarrhea and vomiting. My Dr prescribed Magnesium Oxide (400mg tablets; 2 in the morning; 2 at night) and it has helped. I'll need to get a gastrointestinal appt soon, I think. I have to be careful to eat smaller meals, low fat, non-processed, moderate wheat and dairy, avoid potatoes and tomatoes. Avoid alcohol entirely: red wine can bring misery for people like me. Other food intolerances might affect you; a two week diary might give you hints. Your eyes look like "Heliotrope Rash." https://www.medicalnewstoday.com/articles/319941#symptoms

marye2 | @marye2 | Mar 23 8:48pm

In reply to @lavendercottage "Herpes is basically a low-grade infection that lives in your body rent free. I have the..." + (show)

Autoimmune can also be geographic tongue or sores in one's mouth. I had a Miracle Mouthwash with Nystatin that cleared it up. Colds make me really sick, even if I sleep in a recliner to avoid it going to the chest.