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julandjo

Recently Diagnosed And Things Have Gone Downhill

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Backstory: I had my gallbladder out in January, and went gluten-free in February. I decided to gluten free because both of my kids (1 and 3y/o) have major food intolerances and gluten is one of their biggest triggers. I thought maybe going gluten-free myself would be a good idea. I immediately felt so good; my joints stopped hurting, I had more energy than I'd had in a decade, my mind was clear, etc. But I still had lots of GI issues. Constipation, gut pain, etc.

In May I was referred to a GI doctor and had an endoscopy/colonoscopy. My biopsy was positive for Celiac, but the doctor said the villi blunting could instead be caused by too much stomach acid so he was hesitant to diagnose me. He had me do a 2-week gluten binge, after which he ran the Prometheus Celiac Plus. I've never felt sicker in my life - I was bloated and swollen, my joints hurt SO bad, I was angry, depressed, my guts felt like concrete, etc. When I went in for my follow-up, he said that when he got the bloodwork back, he had "muttered a few expletives" under his breath. He said that he was certain it would be a clear-cut celiac diagnosis, but on the genetic portion I scored a 3 (the range is 1-8, 8 being definite celiac), and the serum portion (I can't remember the terminology) was negative. [Dang! I wish I'd gotten a copy of this report!]

He then admitted that 2 weeks is often not long enough to build up the antibodies, and asked that I do an 8-week trial so he could re-test me. I laughed and said "not a chance"! He seemed miffed by this and asked me several times, and I kept reminding him how horrible my symptoms were. NOTHING is worth feeling like that. Whether it's true celiac or not, it's clear my body cannot handle gluten. The end result is the same either way: a lifelong gluten free diet. I'm okay with that. So he sent me home with 6 weeks worth of Nexium to see if we can get my gut pain under control. He did say that although he can't give me a "true medical dianosis", he's "pretty sure" I have celiac disease. Fair enough.

Okay, so here's my issue. I'm having a TON of other food intolerances. From reading on this forum I see that's not unusual, but I'm completely floundering here. I'm now 5 weeks gluten free again and I'm in so much pain. I've eliminated the following: ALL grains incl. corn syrup, pork, nuts, coconut, all gums (xanthan, guar, tera, carrageenan), bananas, broccoli, all beans, soy, and msg. These eliminations have happened one at a time after noticing extra pain, but they don't seem logical. I know I need to do a true elimination diet, but I have no idea what would be safe! I cannot give up dairy at this point because there are so few things I'm able to eat. Really I'm surviving on chicken, beef, dairy, fruit, a few veggies, potato/yam and dark chocolate. I'm losing my mind and grasping at straws - maybe I sat too close to my DH when he was eating gluten, maybe I have a parasite or leaky gut, maybe my kids' lotion is causing my itchy skin... ack! Maybe this is the result of not having a gallbladder anymore. Maybe this is all normal stuff after going gluten free. But I'm in so much gut pain 80% of the time. It's affecting me as a wife and mother and it's not fair to my family.

Sorry for the novel. Any advice? Thanks in advance!


Dx'd with Celiac June 2010 via positive biopsy. I got tested because both of my kids (3 and 5 years old) have multiple food intolerances, with gluten being the worst offender.

Free of: grains, dairy, soy, legumes, nightshades, nuts, fish, eggs, pork, citrus and tropical fruits (latex allergy), stone fruits, melons, squash, strawberries, flax, cruciferous veggies and celery.

Yes, I'm HUNGRY.

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I feel so bad to have to tell you this, but you need to give up the dairy. Since your biopsy showed you have blunted villi, that means you are probably lactose intolerant. One of the functions of the villi is to produce lactase which breaks down the lactose in dairy products. If your body cannot break down the lactose then the result is painful bloating, and either C or D.

The GOOD NEWS is that there are MANY replacements for cows milk. Almond milk, Rice milk, Hemp Milk are just a few. Also once you have given up dairy for a while your body MAY heal enough that you can go back to eating it. I was able to add back in a little dairy after 6 months. Right now I can eat yogurt and low lactose cheeses without problems. I have also discovered that goats milk and goats cheese doesn't bother me like cow's milk does.

Trust me giving up dairy is not the end of the world. If you need help with what to eat the people on this board are great at making suggestions.


A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

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I feel so bad to have to tell you this, but you need to give up the dairy. Since your biopsy showed you have blunted villi, that means you are probably lactose intolerant. One of the functions of the villi is to produce lactase which breaks down the lactose in dairy products. If your body cannot break down the lactose then the result is painful bloating, and either C or D.

The GOOD NEWS is that there are MANY replacements for cows milk. Almond milk, Rice milk, Hemp Milk are just a few. Also once you have given up dairy for a while your body MAY heal enough that you can go back to eating it. I was able to add back in a little dairy after 6 months. Right now I can eat yogurt and low lactose cheeses without problems. I have also discovered that goats milk and goats cheese doesn't bother me like cow's milk does.

Trust me giving up dairy is not the end of the world. If you need help with what to eat the people on this board are great at making suggestions.

Oh man this is NOT what I wanted to hear. :) So okay, if I (very grudgingly) give up dairy, how long until I feel relief? I think it'd be a bad idea to trade dairy for something else I've eliminated... I should probably wait until I feel better, then retrial a new food. Right? Without dairy, my diet is seriously not up to nutritional par.


Dx'd with Celiac June 2010 via positive biopsy. I got tested because both of my kids (3 and 5 years old) have multiple food intolerances, with gluten being the worst offender.

Free of: grains, dairy, soy, legumes, nightshades, nuts, fish, eggs, pork, citrus and tropical fruits (latex allergy), stone fruits, melons, squash, strawberries, flax, cruciferous veggies and celery.

Yes, I'm HUNGRY.

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Oh man this is NOT what I wanted to hear. :) So okay, if I (very grudgingly) give up dairy, how long until I feel relief? I think it'd be a bad idea to trade dairy for something else I've eliminated... I should probably wait until I feel better, then retrial a new food. Right? Without dairy, my diet is seriously not up to nutritional par.

Give it a try for a two-three weeks. If you see NO difference you can always add it back in. Some people also use lactaid products to make it easier to digest dairy, but I think you should find out if it is really bothering you first by eliminating it. If you have a lot of damage the lactaid may do nothing to help you. As far as nutrition you can get whatever you may be lacking by adding supplements (just make sure they are gluten free/dairy free as well). You may also be surprised at how many other food have calcium and Vitamin D. Eggs are high in vitamin D and Almonds have both Vitamin D and Calcium. Greens like Kale, Spinach, or mustard greens have high amounts of calcium as well as Iron. Salmon also has some calcium in it. Figs are also high in Iron and have calcium. So if you are worried about getting enough calcium or Vitamin D you can get it from eating these foods.


A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

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I cannot speak to the complexities of your personal situation (my own was quite complicated because I have other autoimmune disorders) but as a word of consolation, it took me nearly 6 months to feel better after going gluten free. I was going out of my mind listening to advice about this food allergy and that food allergy, but, at the end of the day, sometimes it just takes a fair old time for your gut to heal.

I do, however, drink lactose-free milk as it is a fact that lactose is very difficult for your blunted vili to process. After months of not feeling better, I was diagnosed with microscopic colitis, inflammation of the large intestine and very common in people with celiacs. I took Pepso Bismul regularly as this is thought to have anti-inflammatory properties, and it certainly helped to settle my stomach.

Good luck--just remember, it can take a while to heal . . .

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GlutenFreeManna is definitely a great person to talk to about this. As well as the leafy greens and fatty fish, I'd also suggest adding some sea vegetables (seaweeds) into your diet. They are nutrient dense and high in calcium, folate, and iron. Also, they taste really good and add nice flavor to foods. You can get them at a health food store, or order them online.

It sounds like you may have a lot of damage to your digestive system. :( Newly-diagnosed celiacs/gluten intolerants are often unable to tolerate dairy (I'm not). It's less common to be intolerant to grains. I don't know if you've tried quinoa. It's the grain that's easiest for our bodies to digest. In any case, you should be able to add foods back into your diet one at a time as you heal.

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It's a long shot, but some people react to the nightshade family of plants, which includes potatoes and green/red peppers, believe it or not. Try swap potatoes out for rice and see if you feel any better? Also check out what's on the nightshade family, some veggies might be included there.

I always recommend keeping a food journal to see if your symptoms link up to specific foods, but if it's constant you might not see a pattern :(

Good luck with finding the cause!


Feb 2010 - Start of continuous GIT problems and panic attacks

July 2010 - Blood and biopsy -ve, went gluten free after testing which completely relieved symptoms

July 2011 - 1 year gluten free, food intolerances (Chicken, eggs, olives, goat milk) gone!

2012 - Soy no longer a problem

*************************************************************

Gluten intolerant

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Some possibilities of things I've heard of that seem like one is reacting to everything.

1. Parasites or bacterial infection - I know giardia is known for having false negative tests very commonly.

2. You could still be getting corn? I didn't know how much research you've done, but I know that it was the one thing I continued to get for the longest time, because I didn't realize where it was. It's in all iodized salt (stabilizes the iodine), baking powder, it's put between paper plates and paper cups in packaging, it's added to the ice that grocery stores put their veggies in. I've just heard that some vitamin fortified milk my be contaminated with it, too. SO easy to get zapped with corn. I would bet quite a bit of money that it's in the medicine your doc just prescribed, too. Almost no medicines are free from corn. If you check out some corn allergy sites they can help you figure out how to avoid it.

I've also found that I am sensitive enough to react to foods derived from corn (and others), even if they supposedly don't have any 'detectable' levels of corn. Most corn tests detect 50ppm or more, and I have seen other people who react to it at lower levels, so perhaps you as well? Again, the corn allergy sites have been a godsend for finding what these ingredients are! (like citric acid and xanthan gum)

I am ALSO the same with gluten. Anything derived from gluten, whether distilled or processed, does bad, bad stuff to me. I figure there is always potential for contamination if a food is being made with an ingredient, simply because it means that ingredient is all around that area. We're only human, yeah? Perhaps you are reacting to very trace amounts of some allergen in your diet or your environment?

3. Fructose Malabsorption - it's a condition that can develop in people who have gut issues, and it involves fruits, grains, veggies...all sorts of foods. There are diets to avoid the problem foods, but I know it's another issue that makes it feel like you react to EVERYTHING.


T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

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Wow you guys. I am so thankful this board is here as a resource, and that you all took the time to advise me. THANK YOU!! I am dairy-free as of today... *teardrop* Hopefully things will turn around and I can start to get a few foods back into my diet. If not I'm going to request some more testing.


Dx'd with Celiac June 2010 via positive biopsy. I got tested because both of my kids (3 and 5 years old) have multiple food intolerances, with gluten being the worst offender.

Free of: grains, dairy, soy, legumes, nightshades, nuts, fish, eggs, pork, citrus and tropical fruits (latex allergy), stone fruits, melons, squash, strawberries, flax, cruciferous veggies and celery.

Yes, I'm HUNGRY.

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I bet going dairy free will help other food intolerances. I hated giving it up too! But I hear in your words you are at the point where you just want to feel better. Dairy free will help best of all. The rest. . . well, one day at a time, no?

-Daisy


I haven't got the slightest idea how to change people, but still I keep a long list of prospective candidates just in case I should ever figure it out.

--David Sedaris

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For me, food allergy testing gave me alot of direction and a nice calm digestive system after eliminating all those that I tested positive to.


Me: GLUTEN-FREE 7/06, multiple food allergies, T2 DIABETES DX 8/08, LADA-Latent Autoimmune Diabetes in Adults, Who knew food allergies could trigger an autoimmune attack on the pancreas?! 1/11 Re-DX T1 DM, pos. DQ2 Celiac gene test 9/11

Son: ADHD '06,

neg. CELIAC PANEL 5/07

ALLERGY: "positive" blood and skin tests to wheat, which triggers his eczema '08

ENTEROLAB testing: elevated Fecal Anti-tissue Transglutaminase IgA Dec. '08

Gluten-free-Feb. '09

other food allergies

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I just wanted to post an update. On everyone's advice, I gave up dairy. Man oh man did that one make me sad, but guess what? I feel AWESOME now. Seriously, the difference is night and day. If things continue to go so well I'll start trialing new foods again. I'd love to have corn back. Anyway, THANK YOU so much; I'm a new person now!


Dx'd with Celiac June 2010 via positive biopsy. I got tested because both of my kids (3 and 5 years old) have multiple food intolerances, with gluten being the worst offender.

Free of: grains, dairy, soy, legumes, nightshades, nuts, fish, eggs, pork, citrus and tropical fruits (latex allergy), stone fruits, melons, squash, strawberries, flax, cruciferous veggies and celery.

Yes, I'm HUNGRY.

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I just wanted to post an update. On everyone's advice, I gave up dairy. Man oh man did that one make me sad, but guess what? I feel AWESOME now. Seriously, the difference is night and day. If things continue to go so well I'll start trialing new foods again. I'd love to have corn back. Anyway, THANK YOU so much; I'm a new person now!

This is such great news! I know it must have been hard for you but you did it. I hope the feeling awesome stays just be sure when you add stuff back in to do it with whole foods and one at a time for a week before you add something else.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Oh that is wonderful!!! So happy to hear that. Every time I hear someone has figured out all this #$!#$! junk going on in their body, I just wanna cheer! Yeaaa! :D


T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

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Fantastic news, so glad that you're feeling better!


Feb 2010 - Start of continuous GIT problems and panic attacks

July 2010 - Blood and biopsy -ve, went gluten free after testing which completely relieved symptoms

July 2011 - 1 year gluten free, food intolerances (Chicken, eggs, olives, goat milk) gone!

2012 - Soy no longer a problem

*************************************************************

Gluten intolerant

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