Much needed advice for testing and my symptoms

[ashnich]

Hi, I am new to this forum and I’m looking for some advice. I am 22 years old and I live a healthy lifestyle with regular exercise, a balanced diet, and occasional social drinking in moderation on weekends. For the last two years I have gone through an obnoxious amount of testing, but with every lead comes a new wall that I hit. To give some background, 2 years ago I began having a lot of digestive issues. I was having BM only 1-2 times a week (I have been this way for as long as I can remember); however, often times they were only occurring when a meal made me ill and I would be in pain for hours before and/or after. I also became aware that I had developed a hemorrhoid as a result of my constipation. I went to my physician and after some blood work and a positive result from a bloody stool test, she sent me to a GI. From there I had tons of blood work, a MRI, an endoscopy, and a colonoscopy. I was tested for celiacs, gallstones, thyroid disease, and all sorts of things, but nothing came back positive. Then in September my eyelids starting swelling shut and they were extremely raw and itchy. I went to the doctors and I was given steroids; however, as soon as I finished the steroids my eyes swelled shut again. This time I went to an allergist and I had a small reaction to wheat after being testing via back pricks. I went home and discovered that my new mascara contained wheat, and nearly every other mascara does not contain wheat. I stopped using the mascara and my eyes haven’t swollen since. My question is, is it possible that a back prick could show a smaller reaction than what my intestines could be experiencing? I was diagnosed with Gastritis and Duodenitis after my scopes, and none of my symptoms (all are found below) have gotten better. I am extremely frustrated and I am tired of the pain and illnesses. I am considering making an appointment with an allergist for skin patch testing to see if I have delayed reactions to food. I am wondering if I am allergic to other foods because several times a week I experience the deep itch in my throat and ears that I cannot relieve. I understand that not all of the "symptoms" that I have listed below will relate to food allergies, but I wanted to be thorough in case something catches anyone's eye. Any insight would be much appreciated!   
                                                                                                                                                                                                                                                                                                                                                                                                                 
Symptoms
1.   Abdominal Pain
2.   Hiatal Hernia
3.   Acid Reflux
4.   Lactose Intolerance
5.   Joint Pain
6.    Stool is either very soft and light or dark and hard..no in between
7.   Hemorrhoids
8.   Eye Floaters (I can pull them out of my eyes every 15-30 min)
9.   Nausea
10.   Shortness of Breath
11.   Constipation
12.   Random, sudden diarrhea
13.   Swollen Eyelids
14.   Dizziness/ Headaches
15.   Mild Liver Enzyme Elevations (in the 50s, instead of below 30 and 40)
16.   Exhaustion
17.   Deep itch in throat and ears after eating
18.   Anxiety: this summer I was miserable. I have never been so unhappy and it drained me.
19.   Joint Aches (often and when consuming certain alcohol such as wine coolers and hard lemonade)
20.   Iron deficiency anemia (during menstruation)
21.   Gastritis
22.   Duodenitis

[twinturbo]

With abnormal liver functions I'd next pursue a CBC blood count to check for white blood cell count. That's not normal, that should not be ignored and that is not part of IgE-mediated allergies. My first stop would be ruling out infection and Celiac, then possibly Lyme, RA, other autoimmune issues. Definitely infection and Celiac first. But that's what I would do based on the symptoms you describe even though I know you had a test. It's not adding up to food allergies.

[ashnich]

With abnormal liver functions I'd next pursue a CBC blood count to check for white blood cell count. That's not normal, that should not be ignored and that is not part of IgE-mediated allergies. My first stop would be ruling out infection and Celiac, then possibly Lyme, RA, other autoimmune issues. Definitely infection and Celiac first. But that's what I would do based on the symptoms you describe even though I know you had a test. It's not adding up to food allergies.

Actually, I maybe should have mentioned this...I'm not sure if this means anything but they did the same blood work the following week as well. For the first round I didn't fast (when my enzymes were elevated) and the second time I did fast and my enzymes were within normal range. For the first round of blood work, they did test my WBC and I got 5.3 which was considered to be good and within the 3.8-10.8 range. As for celiac, I have a first cousin with it as well and according to the blood work and my scopes, I do not have Celiac. I have also been tested for other autoimmune disorders and nothing came back. I have weird patterns of things that would correlate with an autoimmune disorder (raynaud's disease, anemia, low blood pressure (100/68), etc), but since the tests are coming back negative it seems like a dead end.

[twinturbo]

For starters, that's good. It means that your WBC was at least at that point within normal. However, you can still have infection as a chronic carrier. Have you been tested for HBV?

[ashnich]

For starters, that's good. It means that your WBC was at least at that point within normal. However, you can still have infection as a chronic carrier. Have you been tested for HBV?

I don't think that I have been tested. I was vaccinated for it 15 years ago, and I looked at the ways that you can contract HB and I do not think it is possible for me to have been infected. I did have a small cyst in my liver that they discovered during the MRI; however, based on blood work its non-parasitic.

[twinturbo]

I would roll through the various hepatitis tests if you haven't. I'm surprised with abnormal liver function results and associated symptoms as you mention that they haven't. Even when my titers showed immunity to HBV I was still tested multiple times for hepatitis and HIV based on chronically low WBC count alone. No other factors.

Regardless, pursuing IgE-mediated allergy alone isn't going to clear up the unassociated symptoms you're experiencing. The danger in doing so is missing a true underlying diagnosis.

[ashnich]

I guess what throws me off is that it says that you need to share a toothbrush, razor, needle, have intercourse, etc to get HBV and I haven't done any of those things. And no one in my family has HIV or HBV, so I wasn't born with it.

After all of my tests, my GI just told me to take a bunch of vitamins and Miralax indefinitely (which I did not do because it will atrophy my intestines), so I'm just frustrated because none of things are normal and yet no one has found a real solution. Only a few "symptoms" have been treated without getting to the bottom of things.

Thanks for your suggestions though

[momma2boys]

It sounds like something my niece is going through. Similar at least. She just went to a specialist and they are doing the breath test to check for overgrowth of bacteria and if that is normal they suspect ibs. She has always had issues since she was a baby. She tried gluten free diet and that helped but still chronic constipation and stomach pain and bloating. She is also lactose intolerant.

Are you following a wheat free or gluten free diet?

[LinksEtc]

Sometimes fresh eyes can make a big difference.   Have you considered getting second opinions from other GI & primary doctors? 

http://patients.about.com/od/discoveringyourdiagnosis/a/need2ndopinion.htm

http://patients.about.com/od/therightdoctorforyou/a/findsecondopin.htm

http://patients.about.com/od/discoveringyourdiagnosis/a/workwith2ndopin.htm

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http://patients.about.com/od/yourdiagnosis/a/How-Common-Is-Misdiagnosis-Or-Missed-Diagnosis.htm

[rebekahc]

For starters, I'm so sorry you're suffering with so many symptoms!  I have/have had many of the same symptoms and I know how frustrating it can be to try and nail down a cause.

So, wheat allergy.  It's possible, but know that SPT (skin prick testing) is only about 50% accurate for positives.  So, there's a good chance that your positive result was a false positive.  The only way I know to narrow down whether it's a real allergy for you would be to completely eliminate wheat from all aspects of your life and diet for several weeks.  See how your symptoms go.  If they improve, then I would re-introduce wheat in your doctors office as a food challenge.  If your symptoms don't improve, then I don't think it would be worth it to continue to avoid wheat.  Your experience with the mascara makes me think wheat allergy might be an issue, but I'm not really sure it's likely to account for all your symptoms.  Plus, it would be unusual for you to have a bad contact reaction to wheat but have ambiguous symptoms to ingestion.  Twice over the years I've run into an eyeliner that did the same thing to my eyes even though it did not contain my allergens, so it could be something else in the mascara bothering you.

That leads me to your symptoms that aren't typical allergy symptoms...  Several years ago I discovered I had a vitamin D deficiency.  Since treating that, many of my symptoms have gone away or are much improved including joint pain (even though I do have an autoimmune arthritis), migraines and diarrhea.  It's just something worth looking into, IMO.  FWIW, another member here noticed similar results with vit. D therapy.  Things that have not improved are my acid reflux and mildly elevated liver enzymes.

My final suggestion would be to keep a food diary where you record everything you eat each day and any symptoms (especially those that are more typical of IgE mediated food allergy - diarrhea, throat/ear itching, shortness of breath, abdominal pain, etc.).  That will help you in finding any correlation to food.

[ashnich]

For starters, I'm so sorry you're suffering with so many symptoms!  I have/have had many of the same symptoms and I know how frustrating it can be to try and nail down a cause......

....That leads me to your symptoms that aren't typical allergy symptoms...  Several years ago I discovered I had a vitamin D deficiency.  Since treating that, many of my symptoms have gone away or are much improved including joint pain (even though I do have an autoimmune arthritis), migraines and diarrhea.  It's just something worth looking into, IMO.  FWIW, another member here noticed similar results with vit. D therapy.  Things that have not improved are my acid reflux and mildly elevated liver enzymes.

My final suggestion would be to keep a food diary where you record everything you eat each day and any symptoms (especially those that are more typical of IgE mediated food allergy - diarrhea, throat/ear itching, shortness of breath, abdominal pain, etc.).  That will help you in finding any correlation to food.

My GI had me taking probiotics and prenatal vitamins since they are packed with just about everything. I honestly can't say that anything that I did made drastic changes, but when I was taking the vitamins and eating gluten free, I felt better for longer periods of time. In regards to the food diary, aren't there foods that can sometimes take days to have reactions to? I know that I have had a meal that has made me ill and then ate the same things two days later and felt fine, so how do I know if it was that meal that I just ingested or something that I ate hours or days prior to that moment?

[CMdeux]

aren't there foods that can sometimes take days to have reactions to?


Not really-- that's not how IgE-mediated allergy works, anyway. 

If you can eat a food "sometimes" then it's not food allergy.  Yes, that's a blanket statement, and I'm sure in time someone COULD come up with a scenario in which that isn't so, but it's....unusual to the point of near-impossibility.

Autoimmune really seems to be the most common and obvious path if you've had a ton of workups aimed at viral causes and metabolic issues (and it sounds as though you have).

[rebekahc]

For starters, I'm so sorry you're suffering with so many symptoms!  I have/have had many of the same symptoms and I know how frustrating it can be to try and nail down a cause......

....That leads me to your symptoms that aren't typical allergy symptoms...  Several years ago I discovered I had a vitamin D deficiency.  Since treating that, many of my symptoms have gone away or are much improved including joint pain (even though I do have an autoimmune arthritis), migraines and diarrhea.  It's just something worth looking into, IMO.  FWIW, another member here noticed similar results with vit. D therapy.  Things that have not improved are my acid reflux and mildly elevated liver enzymes.

My final suggestion would be to keep a food diary where you record everything you eat each day and any symptoms (especially those that are more typical of IgE mediated food allergy - diarrhea, throat/ear itching, shortness of breath, abdominal pain, etc.).  That will help you in finding any correlation to food.

My GI had me taking probiotics and prenatal vitamins since they are packed with just about everything. I honestly can't say that anything that I did made drastic changes, but when I was taking the vitamins and eating gluten free, I felt better for longer periods of time. In regards to the food diary, aren't there foods that can sometimes take days to have reactions to? I know that I have had a meal that has made me ill and then ate the same things two days later and felt fine, so how do I know if it was that meal that I just ingested or something that I ate hours or days prior to that moment?

The vit. D amounts used to treat vit. D deficiency are much higher than those found in typical vitamins - I'm talking 10,000 IU or more.  Prenatal vitamins have D in the 400 IU range.  Once my deficiency was treated, I still need to take a high dose of vit. D to maintain, but it varies depending on time of year.  In the winter, it's around 2,000 - 3,000 IU daily (plus what's in my calcium supplement).  In the summer, it usually drops to around 1,000 IU daily.

Most food allergy reactions will happen within 4 hours of ingestion.  There can be reactions to food that are not allergic in nature - Celiac, lactose intolerance, EE (and related conditions), etc. - that may present with more delayed onset of symptoms.  Outside of those known conditions, however, other delayed food reactions have not been scientifically proven.

[ashnich]

Thank you so much rebekahc! I'll look into trying to intake more vitamin D!

[my3guys]

I only have a few seconds right now, but this jumped out at me: how long have you been taking prenatal vitamins?  They can be incredibly constipating with all the iron in there.  I know you've had that problem longer, but I would consider switching vitamins.  That's the only thing I can think of.  Hope you get to the bottom of it and feel better!