recently dx with lymphocytic colitis

jmiller39 · Post by **jmiller39** » Wed Apr 06, 2011 9:36 am

Hi I am new to this! I am trying to find some answers to my dx? I was just dx with lymphocytic colitis. My lab report from the terminal ileum to the rectum all said "increased intraepithelial lymphocytic infiltrate and focal lymphoid hyperplasia.

I have had terrible diarrhea followed by constipation for months now. Have not really noticed any type of pattern with what I am eating though? I have noticed that when I get diarrhea it is very very greasy looking?

I have also found in my research the LC might be linked to celiac? Any advise would be greatly appreciated:)

Zizzle · Post by **Zizzle** » Wed Apr 06, 2011 11:22 am

Jmiller!
Yes, LC is often linked to celiac, and we here know it is associated with gluten intolerance, even for those of us without full-blown celiac (small intestine villus atrophy). Many here get testing through Enterolab.com to determine our food sesitivities. Most MC/LC sufferers react to gluten, dairy (casein protein), and soy, and we often have lists of other food inolerances, sensitivities, or gut irritants (lettuce, fiber, citrus, alcohol, etc) that we stay away from. The limited diet is tough at first, but it gets easier, especially when you know it's helping you get your life and health back.

If you have not been tested for celiac disease yet, you should before starting a GF diet (if you can afford/have insurance to get tested). If you forego testing by your doctor or through Enterolab, you could simply try a GF/DF/SF diet and see how you feel. I've been managing my LC without meds, but your doctor may offer you Asacol HD, Endocort or others to help with your symptoms. They may work, but they will not fully heal your gut until you also address your food sensitivities.

Most people here have only D, but D plus constipation can also happen in LC. Greasy-looking stools are common, because you are not properly absorbing the fats and oils in your diet.

You have come to the right place to get this figured out. It's a long road and often a bumpy one, but you will start getting better soon.

jmiller39 · Post by **jmiller39** » Wed Apr 06, 2011 12:05 pm

Thank you for the information! I do have an appt. with a gastro doctor April 19th and have many questions for him. I have also notice through all of this that raw veggies do not digest, I have never had that problem before.

Thank you again for the reply, this website is great and I am so glad I found it

One more question? Has anyone else experienced extreme fatigue and achy joints with this? I have had achy knee and hip joints for years now and the fatigue has been horrible for months?

Zizzle · Post by **Zizzle** » Wed Apr 06, 2011 12:15 pm

Most of us cannot do raw veggies it all, only well cooked.

Your doc should minimally be willing to do a celiac panel blood test and a genetic test to let you know if you have the common gene types for celiac or gluten intolerance (HLA DQ2 or 8). Many here paid for the gene test thru Enterolab ($150), so if your insurance can cover it, better to get it thru your doctor. If the celiac panel is negative, which it often is in MC, your doc may not offer to do an endoscopy with biopsy, but you never know. You can mention Enterolab testing and see what he thinks (he'll probably poo-poo it, but if he's open and enlightened, he's a keeper). Frankly, if he's open to a any diet connection in LC (not just "avoid fiber and spicy foods", but true intolerances), he's a keeper.

Since your biopsies are so recent, you may wish to request special staining of the biopsy samples to look for mast cells. Mast cell involvement is being implicated in all types of GI problems, including IBS. They may explain why stress and histamine-rich foods aggravate MC.

Good luck at your appointment and let us know how it goes!

Post by **tex** » Wed Apr 06, 2011 12:33 pm

Hi J,

Welcome to the board. FWIW, my symptoms were just like yours - I had alternating D and C, and joint pains and muscle aches that felt like the flu. My knees became so inflamed that I had to use a cane, to get around. My neck was so stiff and sore that I couldn't sleep at night when it was at it's worst. I even kept a food/reaction diary, but I never could tell for sure what was really causing the problem, so I cut out all gluten, and then later, I cut out a bunch of other foods that seemed to cause problems sometimes, and then I was finally able to get my symptoms under control. After my gut healed, even the arthritis, and brain fog, and all the other symptoms went away, and they haven't been a problem since.

My symptoms seemed to cycle about every couple of weeks or so. C would turn into nausea, bloating, D, fatigue, and all the other symptoms, and after about a week, they would resolve, and I would feel great for a few days or so, until it would start over.

Again, welcome aboard, and please feel free to ask anything.

Tex

sarkin · Post by **sarkin** » Wed Apr 06, 2011 12:36 pm

Welcome! Some here have celiac as well as MC, and many do not. I joined recently myself and learned that many of us are controlling our condition with diet and medication, and some with diet alone. I'm working on diet alone at the moment, and just ordered the tests from Enterolab that Zizzle mentioned.

And absolutely, yes, you are not alone in having joint pains and aches and fatigue! Many other body systems can be affected by gluten sensitivity and other food intolerances. I stopped all dairy as well as most grains (occasional 'small-dose' servings of rice), because eliminating the diarrhea was way more important to me than keeping any particular food on the plate. Some here have been able to add foods back in as the gut heals, and some have multiple intolerances. Whichever path you choose to take, or is recommended by your doctor, you will find encouragement here. And recipes, and kindness.

My aches initially got better, and now have backslid a little. It's early days, so that may just be the ups and downs of healing, or I may need to eliminate something else. I'm only mentioning that to say - don't be discouraged if it's not a straight path. You will get there.

Sara

Zizzle · Post by **Zizzle** » Wed Apr 06, 2011 12:47 pm

I had achy hips and lower back for as long as I could remember. It felt like my hip flexors were tight but no amount of stretching made them feel better. After I started the GF diet, the hip and back pains and stiffness totally disappeared.

Deb · Post by **Deb** » Wed Apr 06, 2011 6:03 pm

I, too, had a lot of joint pain....hips, back, neck, knees etc. for nearly 20 years. I am feeling better now than I've felt in many years and truly believe most of it is a result of my dietary changes. My main dietary change has been eliminating gluten but I am still determining other sensitivies. My bowels are pretty much back to normal. I do believe that Vitamin D has played a role in the elimination of my pain.

MaggieRedwings · Post by **MaggieRedwings** » Thu Apr 07, 2011 4:38 am

Welcome J,

Sorry to hear about your diagnosis but you have found the best source of information on the internet and possibly even within the medical community. Aches & pains are definitely something a lot of us have encountered but after the gut is healed and in my case, being gluten free, the aches and pains have almost gone away. There is light at the end of the tunnel but persistence will pay off.

Maggie

jmiller39 · Post by **jmiller39** » Fri Apr 08, 2011 7:45 pm

Thank you everyone for the advice! I have my appt. with the GI doctor on April 19th and hope to get some good advice from him.

The problem is I can't seem to find a pattern with what I am eating and what is bothering me? Sometimes veggies really bother me, pizza, fried food, eggs, even wheat bread has sent me to the bathroom. The gluten free diet seems overwhelming because what doesn't have gluten in it?

Nothing ever used to bother my stomach, I could eat anything!

Thank you everyone for the advise!

Jolene

ant · Post by **ant** » Sat Apr 09, 2011 12:34 pm

Dear Jolene

Welcome from Hong Kong. Diet restrictions seem hugely daunting at first but in fact, with planning, it is possible to eat well. My restrictions are quite difficult since I have multiple intolerances. I have a "chefs card".....its starts with what I CAN eat and then lists restrictions:

To The Chef…. I suffer from Celiac & Microscopic Colitis causing multiple food intolerances.
CAN EAT:
• (Unprocessed) meat, fish, shellfish - grilled, roasted, fried or baked.
• Rice – boiled, steamed or fried in olive oil, rice noodles. Rice or water chestnut flour.
• Salt, pepper, herbs, garlic, onion, dried coconut.
• Vinegar (EXCEPT NO malt vinegar).
• Olive oil (not other vegetable oils), pure coconut oil, pure balsamic oil (not artificially coloured since that contains gluten).
• Well-cooked peeled vegetables (EXCEPT NO: bean, pea, tomato, potato, bell pepper and corn).
• Mushroom, banana, olive, avocado, nuts (EXCEPT NO peanuts and cashew nuts), cooked fruit.
• Wine, spirits, coconut milk (no guar gum added), green tea, pure coco, black coffee, tea.
CAN EAT IN SMALL AMOUNTS:
• Cane Sugar, glucose, fructose, pure maple syrup, honey, raw fruit.
CANNOT EAT
• Gluten (and similar) – wheat, rye, oat, corn, semolina/tapioca – that is in flour, bread, cake, biscuit, wheat pasta, cuscus, tapioca, beer, malt vinegar.
• Soy, Soya/Tofu, Soy lechtin, Worcester source or MSG.
• Dairy – milk, cream, butter, cheese.
• Bean, pea, guar gum, peanut or cashew nut
• Egg
• Potato, tomato, eggplant, bell pepper
• Raw vegetables (e.g. salad)
• Cashew nut and peanut.
• High fructose corn syrup, aspartame.
• Vegetable oils – except Olive Oil, which is fine.

This is only an example. You may have less restrictions.

best wishes, Ant