Nodular Lymphoid Hyperplasia

[Torlan]

Hi all-

I'm new to this board but I'm looking for some support and advice and thought I'd start here. I'm a 23 year old female in veterinary school.

I've been dealing with diarrhea, general abdominal pain, nausea, headaches, blood in my stool, mucus in my stool, and vomiting since December. After numerous tests all coming back normal (including a colonoscopy), I went back home to CA (from KS) to another gastroenterologist (I really hate the one in KS, they just told me I'm stressed and need to be on antidepressants... and I knew this was real, I'm not just crazy)... and finally got a diagnosis. My upper endoscopy looked normal, but he took biospies and found a ton of lymphoid tissue.

I guess I should back up. In November I had a huge lymph node on the side of my neck. Larger than a deck of cards. Dr. told me to just watch it for six weeks and if it didn't get better to come back. It went away but now I have a ton of inflamed lymph tissue in the back of my throat, to the extent of causing me trouble breathing sometimes. Both the ENT and GI in KS told me it was from acid reflux. I was on omeprazole & ranitidine from Dec to May, raised my bed 8", nothing helped the back of my throat. I was treated two weeks on/two weeks off of antibiotics since December for various things... H. pylori twice (I still test positive although my upper endoscopy biopsies didn't find any), SIBO, giardia infection (I work with large animals), etc. Celiac test came back negative BUT I had almost 0 IgA.... (this comes into play almost six months later)... Went to an immunologist because of that, got tested for a ton of allergies, nothing came back. Was put on Allegra which did seem to help me feel better... Also about three weeks of low dose steroids, but nothing improved. IBD panel came back negative as well, as have my numerous stool sample tests (to check for ova and parasites, my dog has had giardia and crypto twice which I think she actually got from me...). My stool in Feb did test positive for yeast, but no treatment for that as of now, the new GI said no more antibiotics and he doesn't think the yeast is the problem.

Now we know the lymphoid tissue (in my throat and stomach) is from the NLH. The GI in CA did a repeat colonoscopy and found the nodules in my terminal ileum and all of his random biopsies found lymphoid tissue. I was really frustrated that I needed another colonoscopy within months of each others. Just proves the GI in KS is worthless, which is what I figured originally anyway.

Now my ultimate question is... what do I do about it/what can I do about it? The GI told me that I just basically need to control my symptoms and there's nothing I can do. Some things I found online said steroids are an option as well, maybe I wasn't on them long enough.

Was the Allegra making me feel better just completely random, or does it have something to do with my immune system? I know I have the IgA deficiency, which my mother thinks must be related to me being premature (7 weeks early, she said I've always had a problem with my immune system, I had to have special vaccines as a kid to try to boost it, etc).

My current symptoms are lower left abdominal pain (worse when I walk around, any ideas?), nausea, yellow diarrhea with mucus and coffee-ground looking blood (4x a day probably), and headaches (not migraines which I've had in the past, but just as painful, just no sensitivity to light and sound, just pain). I've thrown up blood occasionally, maybe once every two weeks.

I'm up for any ideas... diet changes, suggestions for my GI dr for treatment, etc... anything. I heard this just "goes away" but I've been dealing with it since December already, and it's pretty debilitating. I don't want to do anything I just feel pain and bloated and ugh all the time. I really need to be able to focus when school starts again in August. The GI in CA told me to just control my symptoms (Immodium or some other meds I have that are stronger, dicyclomide and something else for cramping?, and Zofran), but I'm more worried about the mucus and blood in my stool. Of course it's not to the point of causing anemia, but I know it's NOT normal and it stressed me out every time I go!! I also have to go in every year for endoscopy/colonoscopy to make sure the nodules do not become cancerous.


Okay, well, I'm sorry this is a really long winded post, but I really would love some advice or suggestions or support if you have any and I thought you needed the full background. Thanks in advance!

-Torlan

[MBombardier]

Welcome, Torlan! Wow, you have been through the wringer!! I am not a veteran here by any means, but hopefully someone else will have some suggestions and/or answers for you.

[tex]

Hi Torlan,

Welcome to the board. Wow! That's quite a history. So you're saying that nodular lymphoid hyperplasia is the diagnosis? The likely reason why your doctors say that it will go away on it's own is because while NLH is somewhat common in children, it is rare in adults.

Copious production of mucus is characteristic of inflammatory bowel disease, (including MC), and it is the result of the body's attempts to protect the epithelium of the intestines from whatever agent is causing the inflammation. MC, of course, does not involve bleeding.

Did your GI doc, (the one in CA), by any chance request a special stain for the biopsy samples, to allow the pathologist to do a mast cell count as well? The reason I ask, is because if an antihistamine provides relief, that suggests mast cell issues in your intestines. There are several possibilities that can cause mast cell issues. Either you have an excess number of mast cells, (mastocytic enterocolitis), or you have a normal number of mast cells, but they are degranulating, (when they should not), or you are either sensitive to foods that promote mast cell degranulation, or you are sensitive to foods high in histamines.

To date, I can recall at least 3 other members who have shared that diagnosis. Two of them posted in the thread at the first link below, and the other posted in the second link. IgA deficiency seems to be a common issue for adults with the condition.

http://www.perskyfarms.com/phpBB2/viewt ... yperplasia

http://www.perskyfarms.com/phpBB2/viewt ... yperplasia

Yellow diarrhea can have a number of causes. It can be caused by low bile production, bacterial infection, parasite, or viral infections, certain laxatives, certain antibiotics, such as Ciprofloxacin, (and possibly the other fluoroquinolones), as well as some medications used in chemotherapy, certain foods, and diseases such as lymphoma. Since lymphoma is an obvious possibility, I would assume that your doctors have at least ruled that out, (I hope).

Something is really out of whack, and it may be your immune system, because of the IgA deficiency. That would appear to be the primary issue to address, or am I looking at this wrong? Incidentally, are you aware that as a general rule, a good vet typically has a much better understanding of the effects of food sensitivities on the human digestive system than most human GI specialists? That's my opinion, anyway, FWIW. DogtorJ, (Dr. James Symes, who practices in England, I believe), for example, is a prime example of this.

Since inflammation appears to be driving your symptoms, the most likely suspects, (IMO), would be dietary gluten, casein, soy, and possibly corn. Since your doctors appear to be stymied, if I were in your shoes, I would try eliminating at least all gluten, dairy, and soy, from my diet, and I would take a daily dose of cromolyn sodium, (Gastrocrom), plus a type 1 antihistamine, at least 15 or 20 minutes before each meal. The cromolyn sodium will help to prevent the degranulation of mast cells, and the antihistamine will help to counteract any that happen to degranulate. You should be able to tell within a couple of weeks or less, if you're on the right track with that approach.

I have no idea how to address the IgA deficiency, though - that's outside my area of knowledge.

Again, welcome aboard, and I hope that you can find some answers here that prove to be beneficial.

Tex (Wayne)

[MBombardier]

IgA deficiency can't be fixed (just got tested for that myself), but sometimes people spontaneously start producing IgA. In the meantime, I hope that you have a bracelet in case you are ever in an accident so the medics know not to give you a blood transfusion because of the IgA in it. I think they have special products to use in that situation??

[sarkin]

Torlan,

Gosh, you must be yearning for some relief, and I hope you get some soon.

I have had yellow-ish, mucus-y diarrhea with my MC - much worse when I was worse generally, but even mildly when GI symptoms had improved (when energy was better and no cramping).

I agree with Tex that the elimination diet might help. Even if it just buys you temporary/symptom relief while you progress with the whole rest of your health picture, it would be worth it.

In addition to the cromolyn sodium & antihistamine Tex mentioned, there is an enzyme available called Histame, which helps process histamines in food. It might be worth having that in your toolkit. It would not make gluten or any antigenic food safe for you (nor would it address a true allergy), but it could help if histamines are an issue for you. (And if it helps, it would confirm your suspicion - as would Tex's other suggestions).

There is a list of histamine-containing foods here: http://www.urticaria.thunderworksinc.co ... restricted

I hope you're on the path to healing soon,

Sara

[Torlan]

Hi Tex-

Is the gastrocrom a prescription? Should I just call my GI and ask for it, or how do I go about getting it?

Yes, my diagnosis is nodular lymphoid hyperplasia. They did rule out lymphoma (although their original guess was MALT lymphoma) because my bloodwork was normal and biospies did not show any cancerous cells or precancerous cells. Yet. I have to go in every year to check and make sure. Most of the time I wish it WAS MALT lymphoma because then I'd actually have a treatment instead of this, where I just have to live with this for longer. It's a little overwhelming and frustrating and sad and... etc. I'm sure you all understand, unfortunately.

They did do special stainings and pathology although he never told me specifically anything about mast cells. I just took an immunology class so I definitely understand where all of this is coming from though! Although sometimes I wish I didn't understand as much as I do... it's much easier to just pretend everything is okay (...when I know it's not). They are sending me everything they did in the mail so I can give it to my GI doctor, so I'll glance over it and see if they did anything with mast cells. He only told me abundant "lymph tissue" was found in my stomach biopsies and the terminal ileum nodules. He sent me a paper case study about NLH that I've been able to find online as well.

I'm on no medications that would be causing the yellow stool. My stool showed no bacteria or parasites although I'm thinking it's still a possibility. I know with dog stool samples you really have to check the entire thing to find a problem, not just one or two slides like they've been doing with my samples. Although I've had four or five stools done, so you'd think they'd catch something once. My dog still has been battling giardia and other bacterial overgrowths and diarrhea, so I just find it rather ironic that they aren't related. Although I was away from her for three weeks recently and my symptoms did not improve either. The new GI doctor thought the yellow stool could be from the acid reducing meds I was on for so long, but I've been off them for about a month now and no improvement (or worsening either, ha).

I have noticed that when I feel worse generally (achy, sore, nausea/dizziness, bloating, etc), I tend to have more mucus-y bloody stool.

I have tried a few different diets although not a completely gluten free diet because they wanted me on rice and toast for my diarrhea. Although I've never had a problem associated with my diet before. (Is it possible to just start having gluten (or whatever) intolerance at age 23? My symptoms of all of this started suddenly one day in December, no building up, just BOOM all of this, which made me think it was more something I picked up at the barns, a virus or something?) In fact, after I got sick of my rice and chicken broth diet, I ate a "real meal" of pork chop and asparagus and pasta and felt better. I tried eliminating the most sulfites out of my diet and life as possible (including shampoo) because my immunologist knew I was sensitive to sulfa drugs and can't use an epipen because of the sulfides used to preserve it. That didn't make a difference either.

Would any Type 1 antihistamine be okay? I have been taking benedryl occasionally (dr suggested it for headaches and when I feel like I can't breathe because of the lymph swelling in my throat), but the immunologist suggested Claritin instead of the Allegra he gave me as a prescription, so I have a bottle of that I haven't even touched yet.

M is right though, you can't "fix" an IgA deficiency. It's just a genetic deficiency.


Thanks to everyone for the welcome and advice. I'll try the elimination diet, because like you said, even if it gives some relief it's worth it.

[tex]

Torlan,

Yes, Gastrocrom is a prescription drug. If your GI doc balks, you might ask your GP for a script - as a general rule, they tend to be more compassionate about their patient's needs than most GIs.

As to how we can suddenly become sensitive to gluten, if we have a common celiac gene, (DQ-2 or DQ-8), environmental factors, (including pathogens, viruses, parasites, extreme stress, etc., can trigger celiac disease at any time in our life. In the absence of those genes, virtually all of us have various DQ-1 genes that predispose us to microscopic colitis/gluten-sensitivity, and they can be triggered by the same or similar environmental factors. According to Dr. Kenneth Fine's research, (he is the founder of Enterolab, in Dallas), when the genes that predispose to microscopic colitis are triggered, for most of us, (at least two-thirds of us), the genes that predispose to certain food sensitivities are also triggered, during the same event. Consequently, we can find ourselves with a new disease, and new food sensitivities, virtually overnight. IOW, I'm pretty sure that the triggering of those food-sensitivity genes are not unique to MC - I have a hunch that applies to all other autoimmune diseases, as well. (Research shows that virtually all autoimmune diseases respond to diet changes - the trick is to figure out exactly which proteins in the diet are the problem, because all of them must be totally avoided, in order to achieve remission.)

I agree, as old as the technology is, for using cultures to discover pathogens/parasites in stool samples, the rate of false negative results is unacceptably high. Improved methods are sorely needed.

We have found that as a rule, (for some of us, anyway), benedryl may be somewhat more effective than meds such as Claritin, but the drowsiness issue is a problem in for some individuals, so Claritin, (or a similar choice), may be a more practical option in those situations. We tend to have personal differences in our response to meds.

Sorry, I didn't mean to imply that there is a way to "fix" selective IgA deficiency - I just meant that I have no idea how one should go about living with the condition, nor if it is possible to modify one's behavior, so as to minimize the risks of associated issues.

Yes, a copy of the pathology report should be very enlightening, because many times we have found that they contain information that our GI docs fail to mention to us, (and occasionally they contain important information that the GI may overlook, or may not understand, or may interpret incorrectly). We have a few members who discovered that their pathology report contained a diagnosis of microscopic colitis, for example, that their GI never mentioned, because he didn't consider it important.

Good luck with your treatment trial.

Tex

[Torlan]

Hmm, well I've had a celiac panel and it was negative. But I'm not sure if it tested for the gene or something else. I tested negative on skin test to all foods they tested. Are the GI tract intolerances different than the skin test?

[ant]

Dear Torlan,

Just wanted to say welcome from Hong Kong. I will not get in over my head on the discussion here. Except to say that the information and debate on this Board is the best. As is the compassion.

Wishing you all the best in your journey back to remission. ant

[tex]

Are the GI tract intolerances different than the skin test?

The difference between the skin tests and the stool tests at Enterolab is that the tests at Enterolab are very sensitive and very accurate for detecting food sensitivities. Antibodies to food sensitivities are generated in the intestines, (and subsequently end up in the stool), so that's the logical place to look for them. The skin tests are useful only for detecting skin allergies. As a rule, member results have been quite reliable. Here are some results for various members who have had the tests:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10089

Tex

[sarkin]

Torlan, it's interesting that we're now talking about two sets of tests that have a high rate of false negatives - the human stool tests for pathogens, and the celiac panel that's generally ordered. The bloodwork tends not to show antibodies unless/until the gut damage is pretty severe... but symptoms may come long before that.

It is certainly possible for the celiac panel to come up negative and for gluten still to be a big problem. In my opinion - it *might* be good news that the antibodies aren't also running around in the bloodstream. Hopefully, knocking out the antigenic food(s) will mean that they never show up in the blood at all. (Of course I do not claim that I know whether you're gluten sensitive over the Internet - I do think it might be good to find out either by eliminating it on a trial basis, or via Enterolab testing - I did both).

Similarly, many members have been fortunate not to have villous atrophy in the small intestine (but still cannot tolerate gluten). That is great news, because we all need our small intestine doing its best work. I have not had a small-intestine biopsy myself, nor have I been Dx celiac, but I do have double DQ2 genes, one associated with celiac disease, and my Enterolab results were convincingly high for anti-gliadin antibodies, even after 3 months GF. I'm calling that authoritative (and I also feel much better).

Wishing you answers and relief and recovery,

Sara

[Torlan]

Hi all-

Just an update, I got the Drs notes from the GI in CA, and it turns out they did do a lot of stool anitgen tests, and everything came back negative as well. No mast cells found in my biopsies either.

The bad news is that one of my gastric biopsies DID show up as MALT lymphoma, although all others were benign. He's suggesting I get rechecked in a year, to see if it's spread or whatever. He's not treating it now because there are no obvious lesions or something. Couldn't really focus after I heard that. I'm thinking of a second opinion at Mayo... it seems weird to have cancer and just wait a year.

Here's what it says exactly of my colonoscopy:
Sections show small bowl mucosa with prominent lymphoid aggregates within the lamina propria. The villous architecture overlying the lymphoid aggregates is partially blunted. In other areas, the villous architecture is unremarkable in that lamina propria is normocellular.
CD3 - positive in T cells, usual pattern
CD20 - positive in B cells, usual pattern
BCL-2 - positive in usual pattern
Colonic mucosa is histologically unremarkable. The mucosa shows intact tubular architecture and normocellular lamina propria. No evidence of inflammation, parasites, granulomas, dysplasia, or malignancy.


Upper endoscopy:
Lymphoid aggregates with focal lymphoepithelia lesions, cannot exclude a lymphoproliferative disorder.
Sections of the gastric biopsy show a few lymphoid aggregates, the largest of which shows lymphocytic infiltration of gastric gland epithelium. Immunostains are done to define the abnormality further but this largest lymphoid aggregate is no longer present for evaluation. A smaller lymphoid aggregate shows a benign reactive immunoprofile. Followup is suggested to include additional biopsies as clinically appropriate.
CD20 - B lymphocytes positive
CD3 - T lymphocytes positive
CD43 - T lymphocytes positive
Benign reactive pattern, but the largest aggregate is NOT present for evaluation (see above).




Any ideas? I mean, I understand most of this from my immunology class but I'd love your opinion as well. I'm assuming I do not have a colitis problem. Diarrhea from something else then??

[tex]

Torlan,

This statement means that you almost surely have food sensitivities causing villus atrophy. It's possible that it could be caused by casein, or soy protein, or possibly even zein, (corn), but the most likely candidate, (by far), is sensitivity to gluten in wheat, rye, and barley, (and probably oats).

The villous architecture overlying the lymphoid aggregates is partially blunted.

The following comment, (the part in red), suggests that you probably have gastritis.

Sections of the gastric biopsy show a few lymphoid aggregates, the largest of which shows lymphocytic infiltration of gastric gland epithelium.

This condition seems to have a rather high correlation with H. pylori. That may be at least part of the reason why the NLH continues to be so prominent. It appears that either you have gastritis, or you have an H. pylori infection, or both. The following quote is from the abstract at the following link, (the red emphasis is mine, of course):

Lymphoid aggregates are related, but not exclusively, to H. pylori infection. Their detection rates achieve a peak in young adults with H. pylori infection. Lymphocytic aggregates are also present in chronic atrophic gastritis without H. pylori infection and may relate to autoimmune inflammatory response to other factors.

http://www.ncbi.nlm.nih.gov/pubmed/10912626

That autoimmune inflammatory response that they refer to could very well be gluten-sensitivity, in your case. Gluten just might be at the core of all your problems. Don't expect your doctors to figure that out. For most doctors, non-celiac gluten sensitivity is simply not on their radar, nor are autoimmune issues due to food-sensitivities, in general. They simply don't get it, when food-sensitivities are involved.

Colonic mucosa is histologically unremarkable. The mucosa shows intact tubular architecture and normocellular lamina propria. No evidence of inflammation, parasites, granulomas, dysplasia, or malignancy.

Yes, there doesn't seem to be any sign of MC, UC, nor colonic Crohn's disease.

I don't understand the following comment. Was this a repeat pathology analysis? If not, why wasn't it present?

Immunostains are done to define the abnormality further but this largest lymphoid aggregate is no longer present for evaluation.

I don't see anything that indicates malignancy. Everything noted appears to be benign. I don't see any mention of the special stain required for mast cell analysis, nor any mention of mast cells, for that matter.

In my strictly unprofessional opinion, you have food sensitivity issues that are exacerbating an otherwise benign condition, (NLH). If I were in your shoes, I would order a stool test kit from Enterolab, and check for antibodies to gluten, casein, and soy. Or, alternatively, just cut those foods out of your diet, 100%, and see how long it takes to notice a significant improvement in your symptoms.

None of the tests that you have had so far, would have accurately detected those sensitivities. Note that the biggest risk of untreated gluten-sensitivity is lymphoma, which certainly seems to tie in with what we are discussing here. Right?

Tex

P. S. The mayo has some good GI specialists, but several of our members have used their services, (without success). The problem is, they don't understand food sensitivities, either. If you lived in Colorado, I could recommend a GI doc who could probably figure out what's going on, but he will only accept Colorado residents, unfortunately.

[Torlan]

Hi Tex-

I've been battling H. Pylori for about two years now. They think. I've been treated for it three times now. I test positive on the breath test (and blood test) but my biopsies (approx. 5/22/11) were negative. That wasn't in the pathology, so I didn't include it in the above response. It was in another document. The GI in CA thinks it's just a false negative from something else going on in my stomach, since the biopsy is the only real way to tell if there is H. pylori. Is that correct? I was on antibiotics for it up until two days prior to the endoscopy, but the GI did not seem to think that would effect the results.

I also had these stool tests, all negative. I don't know what they mean exactly, but maybe you will.
ASCA IgA ELISA
ASCA IgG ELISA
Anti-OmpC IgA ELISA
Anti-CBir1 ELISA
Autoantibody pANCA ELISA
IFA Perinuclear Pattern
DNAse Sensitivity

Are any of these the food sensitivity tests you were talking about?

[tex]

Are any of these the food sensitivity tests you were talking about?

No, that test panel is known as Prometheus IBD Serology 7, and it's a blood test designed to identify types of IBD. For example, ASCA stands for Anti-Saccharomyces cerevisiae antibody, OmpC, stands for E. coli outer membrane porin C, etc. Those results help to distinguish Crohn's disease from UC, for example.

These are the tests that I was referring to:

http://www.enterolab.com/StaticPages/TestInfo.aspx

I don't believe that you have an IBD, (at least not yet).

Tex