Have To See An Immunologist

[lynnelise]

I have been strictly gluten free for a year and a half. Before going gluten-free I had a lot of stomach issues (frequent big D, gastritis, acid reflux, persistant pain in left side, gallbladder removed as it was non-functioning, etc), low B12, DH, thinning hair, terrible immunity, unexplained bruising, and more. Most of these symptoms have cleared up since going gluten-free with the exception of poor immunity which may be improved slightly. I should mention that I had a bout with mono about 5-6 months before going gluten free. Prior to that I worked out 5 days a week. Weight lifting, kickboxing, yoga, and boot camp classes. I took time off exercising to deal with mono and started back up before going gluten-free but kept having setbacks. So after going gluten free I took several months off thinking my body needed time to heal. However I am now approaching two years and I'm still completely unable to exercise. Also while I suffered fatigue before going gluten-free it is now actually worse than before.

Here is my usual pattern...I start back with exercising. To clarify I start SLOW. Like light walks, easy weight lifting (5lbs. weights where I used to use 20!!!). Starting with only 15-20 minutes per day. This goes ok for maybe a week. Then randomly I wake up with swollen lymph nodes, sore throat, body aches, general "fluish" feeling. I've gone to the doctor during these flares and am always told it's a virus. No sign of flu or strep. So I rest from exercise. The fatigue will be so bad during the next two weeks that I will have to go to bed immediately after work. The kind of fatigue where your bones feel too heavy to move! When the symptoms pass I will take it easy for another week or so and they try to ease into working out a couple times a week and bam. Cycle starts all over again.

Last week I went on vacation and did a lot of walking. Came home and within three days had broken out with shingles. This is the 6th or 7th time I've had shingles (I am only 33 years old!!!). The doctor says based on my symptoms she suspects an immune deficiency or CFS. I have to go to an immunologist and get a full work-up!

Just for reference I have had my thyroid checked more times than I can count. TSH, T3, antibodies for Hashimoto's even. All negative. I have been checked for Lupus 3 different times (every new doctor I go to immediately asks if I've been tested for lupus). RA tests were negative as of 2 years ago. My last bloodwork showed my B12 is now higher than the reference range and iron is normal.

So I guess this long rambling post was asking does anyone have any idea if this sounds like CFS. Has anyone seen an immunologist? Is there anything I should ask to be checked for?

Thanks for any help!

[cyberprof]

Have you been checked for diabetes, leukemia, lymphoma and had a full physical?

I was reading another forum here and it talked about Low Dose Naltrexone (1.5 - 4.5 mg)is used to treat people with autoimmune diseases. You could ask about that.

[lynnelise]

I'm not sure of the exact tests but I did have some blood work that was supposed to see if cancer was a possibility and they came back ok. That's been around 2 years ago. My blood counts come back normal. Blood sugar always checks out fine so I don't think it's diabetes. Hopefully the immunologist will be able to figure something out.

Thanks for the info on low dose Naltrexone. It sounds really promising!

[bettsk]

I'm not sure of the exact tests but I did have some blood work that was supposed to see if cancer was a possibility and they came back ok. That's been around 2 years ago. My blood counts come back normal. Blood sugar always checks out fine so I don't think it's diabetes. Hopefully the immunologist will be able to figure something out.

Thanks for the info on low dose Naltrexone. It sounds really promising!

Wow, you have just described me and what I am going through, exactly. I'm seeing an immunologist in July about CFS but to be honest after much research and trial and error, I think there are other food intolerances/leaky gut. I have eliminated corn, potatoes aswell as fruits, chocolate, coffee all sugars - the worst bit is that I never had any food allergies so never imagined food to be responsable for any of this. I have started taking supplements for Leaky Gut and actually look and feel like I am living for the first time in a long time - although still have a long way to go.

Let me know how you get on

[elye]

I don't know where you are from, but perhaps lyme disease could be involved... . . . ..you could certainly ask about it.

[cyberprof]

I'm not sure of the exact tests but I did have some blood work that was supposed to see if cancer was a possibility and they came back ok. That's been around 2 years ago. My blood counts come back normal. Blood sugar always checks out fine so I don't think it's diabetes. Hopefully the immunologist will be able to figure something out.

Thanks for the info on low dose Naltrexone. It sounds really promising!

I would have the blood work redo, check for lymphoma and ANA levels. Thyroid should be repeated.

Good luck. Let us know what happens.

[lynnelise]

Thanks for all the advice. I can't see the specialist until June 23rd! I may try to get in without a different one. I'll keep you posted!

[lynnelise]

I don't have much to update on at the moment but I saw the immunologist yesterday. He ordered tests for IgA, IgG, IgM, and IgE. He also tested pneumococcal immunization titers before giving me a vaccine and will test again next month to see if my immune system was responsive to the vaccination. He suggested I have my regular doctor re-run tests for autoimmune disorders and thyroid disorders even though these have previously been negative. I am having those tests run next Wednesday.

I don't want there to be anything wrong but at the same time I have felt so terrible for 2 years and that can't be normal. I'd really like some answers so I can at least have some sort of treatment plan or prognosis!

[Kim69]

Sounds very similar to the run around I am getting. I am so tired. It is now my worst symptom. I have had loads of autoimmune blood tests, thyroid and CBC etc. Am not sure where to go from here. I am feeling worse not better. My abdom pain is less though!

[lynnelise]

Sounds very similar to the run around I am getting. I am so tired. It is now my worst symptom. I have had loads of autoimmune blood tests, thyroid and CBC etc. Am not sure where to go from here. I am feeling worse not better. My abdom pain is less though!

This does sound familiar. My stomach symptoms are under control but the fatigue, body aches, and general malaise are out of hand!

I will say that I know some of my immune system is still working because I had an allergic reaction to that vaccine. That was fun...

[T.H.]

This is a real long shot, but I'll put it out there anyway, just on the off chance it applies!

Have you ever been tested for Valley Fever? It's a fungal infection that is contracted by simply inhaling a spore from the fungus. It is native to Arizona, Southern California, and the Sacramento area in Northern California. It has been contracted even by people just having a layover at the airport in these areas, and even a few times by someone breathing in spores from the clothing of someone who went to these areas and brought it back with them.

It is almost never tested for outside of these three areas, however, because it's not well known. Originally, it starts in the lungs and you get a nasty cough. Often it's diagnosed as the flu or a really nasty cold, where the cough takes a month or three to resolve. Then your body takes care of it and it goes dormant, and no more worries.

But if you have a screwed up immune system - like if you've been suffering from celiac disease for years - it can disseminate into other areas of your body. If this is the case, it can cause flu-like symptoms, exhaustion, malaise, fevers, aches and pains, all sorts of strange, weird crap. It comes and goes, depending on your health level, stress levels, and best I can tell, factors that doctors still haven't figured out yet. Antibiotics tend to make it a little worse, because that kills off the bacteria that competes with the fungus.

This is pretty much what happened to me, but I was in Arizona and so the doctors recognized it. They were just stumped at the time why it would disseminate in a seemingly 'healthy' person. It rang a bell when I read your post, because it used to hit me after I'd start trying to get healthy, too, when I was doing workouts and such. I have always assumed that this was related to the change in diet I tended to make at the same time (where I would eat more sandwiches and pasta to be healthy, sigh), but perhaps there is something else that might be related to exertion and the disease.

Honestly, don't know, but figured it would be worth mentioning.

Oh, also, if you decide to look up this disease...don't let the results freak you out too much, please. It CAN get very scary in some people, but from what I've seen, if that happens, it starts happening pretty early on rather than happen suddenly if it's just been puttering along like this for a while. And while there is no cure, there are anti-fungals that can slow down the growth so your body has a chance to fight it off and get it dormant again.

[lynnelise]

Thanks for the suggestion TH! I'm open to any theories. Valley Fever seems unlikely since of all the illness I manage to catch I rarely catch lower respiratory stuff or cough. Also, I don't travel very far from the East Coast. IL or LA is the furthest West I've been.

While I'm pretty sure that isn't my issue it does look like that needs more awareness! I had never heard of it and I always hear of older people with breathing issues being advised to look into a climate more like AZ!

[lynnelise]

Just a quick update. My immune system checked out fine. No sign of immune deficiency. He said something seems to be stressing my immune system, hence the repeated illnesses. I do have a surgical consult to see if I need an enlarged lymph node biopsied so that may or may not provide answers.

[mamaw]

Just wanted to wish you the best & hope you find answers very soon. Not sure if an endo doc did your testing for the thyroid but most only look at the TSH, they don't look at the Free T-3 & such...another thing may be to check-- your cortisol levels with the saliva test.. You can order that yourself online from the Canary Club... if a medical doctor orders they do blood work...only.. The saliva test is more precise.....

And like someone else said the two Lyme Disease tithers..

blessings

mamaw

[burdee]

Have you been checked for diabetes, leukemia, lymphoma and had a full physical?

I was reading another forum here and it talked about Low Dose Naltrexone (1.5 - 4.5 mg)is used to treat people with autoimmune diseases. You could ask about that.

I took low dose naltrexone for 6 months to increase my white blood cells (esp. neutrophils). After taking Vancomycin for C-diff and Iodoquinol for Dientamoeba fragilis (and treating 6 other gut bugs during a 4 year period), my white blood cells were very low. (Several antibiotics and antifungals, esp. Vanco and Iodoquinol, are known to deplete white blood cells.) My immunity was so challenged that I had one respiratory infection after another (as well as those 8 gastro infections during a 4 year period). 3 months on LDN brought my WBCs back into the normal range. After another 3 months of LDN (total 6 months), I no longer get colds, no matter what I do.

I read on the LDN website how that drug was used for other autoimmune diseases. When I first began LDN, I needed much less thyroid supplement. However, as my body adjusted to LDN, I needed an increased amount of my thyroid supplements. Now that I now longer take LDN, I need a higher dose of T3, but same dose of T4 supplement. So I really don't know how much LDN affected my Hashimoto's thyroiditis (another autoimmune disease). However, my Hashimoto's antibodies decreased after 3 months on LDN. I haven't checked those recently (after 6 months of LDN). However, I can say that LDN certainly improved my immunity (and WBC levels).

[Meowwwww]

Hello,

I read your post, and I'm sorry for what you are going through and I hope you get things figured out.

I understand how you feel. I am constantly tired. I eat right, I work out a moderate amount a couple times a week (I get too run down like you if I try to really get into shape... I have to sleep like 14 hours after a hard work out to feel okay/be functional at all which really doesn't fit into my life), I am thin, I don't drink anymore, I get enough sleep (unlike my housemates and fellow college seniors I hardly ever go out -- too tired. Also, I'm always on top of my school work unless I've been out due to illness), I take my vitamins, and I wash my hands all the time... But I'm sick more than anyone else, and according to every doctor ever there's nothing wrong with me.

Recently, I've missed two weeks of school and been dreadfully ill -- fever of over 100 for 4-5 days, terrible throat pain, and extreme fatigue (no strep, no mono, just a mysterious incapacitating illness). No one else around me has been sick at all. My boyfriend had a slight cold for a about two days, and, knowing my retarded immune system, his two day cold was my two week bit of hell. I had strep seriously 30-50 times before getting my tonsils removed a few years ago, and it took me a good four weeks to recover from that. I bruise really easily. I've had bronchitis twice, mono twice, croup influenza, whooping cough, pneumonia, countless flus, etc. etc. etc.

Like you, I've also been tested for lupus, thyroid disorders (which I really thought could be it for a while because I have an enlarged thyroid... but I got all of that stuff tested 3 times and its normal), diabetes, anemia (my iron's actually kind of high, which I think is weird bc I don't eat a lot of meat. Every doctor thinks I must be anemic, and then it turns out I'm not... It's happened 3 times), no mono, etc. etc. etc.

I'm debating seeing an immunologist, but I really have lost faith in doctors. They're always like, yay you don't have lupus! Or yay your not anemic! Or yay you don't have a thyroid disorder! Or yay it's not diabetes! And, yes, I know those things aren't fun, but the fact that I don't have them doesn't really make me feel better. It just makes me feel hopeless, because I am certain something is wrong with me.

[UKGail]

You don't say if you are gluten free or not, and if you are, how long it has been. Some see an improvement, but not neccessarily a resolution, to their symptoms after going gluten free.