Ok, Now What?!

[gifree]

Hi All-

This forum has been a wealth of knowledge, and clearly a great community to be a part-of, in our shared quest to lead a gluten-free lifestyle. thank you!

Ok, so, I was diagnosed 4-months ago with Celiac Disease - complete villious atrophy. Hey, i never do anything half-assed. In all seriousness, I'm sure this ain't good, but am hopeful that a (near) full recovery can made over time? Comments? Fortunately for me, my health prior to the diagnosis was not bad -- I just thought fatigue, a dull pain in one's stomach, and increasing cognitive issues (of the issues that I was aware of), were going to be a part of my daily life. So, from that perspective, I feel very fortunate to have been diagnosed. BTW: I'm a male, in my mid-30s.

All that said, I feel worse in many ways, now that I'm on a gluten-free diet. My energy levels are all over the place; my stomach is much worse now than when I was consuming gluten; and I now have the benefit of some, i gather peripheral neuropathy, in that my limbs are starting to tingle/go numb. On the plus side, my anxiety level are much better (daily unabating anxiety was horrible) and headaches have dissipated slightly. I know that my vitamin D levels are low, and likely have hypothyroidism -- latest results, 4.875...same as my mortgage rate :-)

Thus far, I've met with 2 GI docs, both of whom told me nothing other than to follow a gluten free diet, a great primary care physician (whom I just began to work with) an ENT who has also been great, but it's not his speciality, and a nurse practitioner, who recently conducted a comprehensive food panel. Those results have me a bit concerned. Sticking to a gluten-free diet...I can do that, but the panel results were gruesome: in addition to wheat, rye, oats, barley & cow's milk, cheese, etc, I am also sensitive to -- apple, asparagus, broccoli, carrot, cauliflower, celery, corn (ugh, this is a real, real challenge, cause I believe most gluten free products use corn as a binding agent, as well as in my supplements and meds), cucumber, eggplant, garlic, grapes, grapefruit, lemon, lettuce, green pepper, white potato, tomato, watermelon, baker's yeast and yogurt. In reading other posts, I understand that developing other food allergies is not all that uncommon. Can these dissipate over time and eventually, the food be reintroduced to one's diet? I feel like I might as well hang outside with the rodents, 'cause my diet will be no different.

I plan to have a vitamin array conducted, a bone density scan, etc. Curious, what else should I be doing as part of my normal 'newly diagnosed' protocol and what else should I possibly be doing, given the profile I described above? I also plan to meet with a registered dietician, but my understanding, from a recent local celiac support meeting, is that truly gluten-free educated dietitians are hard to find.

Thanks for taking the time to read my saga...all comments/suggestions welcome!

[Simona19]

Hi All-

I feel like I might as well hang outside with the rodents, 'cause my diet will be no different.

Hi!

I read this, and I just bursted out with laugh.

I'm the same way. You are not alone. I also have many allergies and food restrictions. I HOPE that I will loose some of them in the future. I'm praying for it.

I'm also 4 months gluten free. I felt very bad for about 3 months. I also had my vitamin panel done. I was borderline on iron, magnesium, vitamin D. My doctor gave me enzymes for pancreas to help with digestion of food. Now after month of taking the suplements I feel much, much better- energy is back. I'm also taking multivitamin with Iron from Nature Made.

You should definitely have your vitamins checked. It helped to me.

I hope that your health will improve rapidly in the near future.

[cassP]

dont know if this makes you feel better- but im not surprised at all by all the other foods you've listed. many of us have many additional food intolerances...

its true that after your digestive tract heals- you MAY be able to add some foods back in with no problem- BUT IMHO, some food intolerances may be forever.

i can handle dairy better than i used to. and i can totally handle eggs & fat

BUT- i have Fructose Malabsorption... and also have issues with some legumes. you should google FODMAP diet and see if any of that stuff rings true for you.

dont worry... things will get better.. but also realize that you may have to avoid some of those foods forever- you're not alone in that either...

[txplowgirl]

Hi there gifree. Welcome to the forum.

You sound like you may have several problems going on. With all those foods you are having problems with could be fructose malabsorption. I agree check out the FOODMAP listings. Also, you could be experiencing withdrawals to. That is normal and should start getting better in a few weeks time. Complete atrophy means you are not able to absorb lactose. Means you definetly need to be dairy free for sure. Maybe in a couple of years time you will be to. I believe a moderator on this board, Peter, had that also and I think he is doing very well now. Also, you could still be getting cross contaminated from gluten. Do you share a gluten household? If so, you need new pans if they are teflon and have scratches in them. Gluten can hide in them. New toaster, wooden utensils and new cutting board. Cannot share condiments. Some one sticks a knife in a pb jar, then on their sandwich, then back in jar. That jar is now contaminated, etc. Check out your soaps, toiletries, lotions, all your medications if taking any. If you have inside pets, their foods. they eat them, then lick their coats, then lick you or you pet them.

There is more but that is just some of what may be going on. Keep asking questions and we will do everything we can to help you.

Vicky

[gifree]

Hi there gifree. Welcome to the forum.

You sound like you may have several problems going on. With all those foods you are having problems with could be fructose malabsorption. I agree check out the FOODMAP listings. Also, you could be experiencing withdrawals to. That is normal and should start getting better in a few weeks time. Complete atrophy means you are not able to absorb lactose. Means you definetly need to be dairy free for sure. Maybe in a couple of years time you will be to. I believe a moderator on this board, Peter, had that also and I think he is doing very well now. Also, you could still be getting cross contaminated from gluten. Do you share a gluten household? If so, you need new pans if they are teflon and have scratches in them. Gluten can hide in them. New toaster, wooden utensils and new cutting board. Cannot share condiments. Some one sticks a knife in a pb jar, then on their sandwich, then back in jar. That jar is now contaminated, etc. Check out your soaps, toiletries, lotions, all your medications if taking any. If you have inside pets, their foods. they eat them, then lick their coats, then lick you or you pet them.

There is more but that is just some of what may be going on. Keep asking questions and we will do everything we can to help you.

Vicky

Thanks all for your responses. My pathology report sounds pretty ugly -- near total to complete flattening of the villi, with prominent crypt hyperplasia and marked degenerative changes of the surface epithelium. Frankly, I have little knowledge of what the hell that means, but it can't be good. Interestingly, I've never had some of the physical sagas of those that I've read about on the board -- no hospital stays, prolonged illnesses, etc. So, I consider myself lucky. I do REALLY hope, that with a vigilant diet, that the condition can be fully remedied and that I can expect to live a long healthy life...maybe longer, because I'm so vigilant with my diet. Thoughts?

Damn, so with this whole lactose intolerance thing, and a height of 5'7", I could have been taller : )

Where things become very difficult, is my attempt to manage meds/supplements, with a vigilant diet. Do any of you have suggestions, given my profile above. I cannot have Corn, for now at least, and know that it is a common binding agent...so that will dictate which vitamin, supplements, over-the-counters I can have. All suggestion welcome...thanks!

[mushroom]

Where things become very difficult, is my attempt to manage meds/supplements, with a vigilant diet. Do any of you have suggestions, given my profile above. I cannot have Corn, for now at least, and know that it is a common binding agent...so that will dictate which vitamin, supplements, over-the-counters I can have. All suggestion welcome...thanks!

I am 99% corn intolerant but I do find that small quantities of cornstarch are okay, so you may find that you can manage scrips and OTC meds that use corn as a filler . You will just have to try it out for yourself. It IS hard to find meds that don't use either.

[GFinDC]

You can read about the digestive system on this link to Kimballs' Biology pages.

Open Original Shared Link

The Marsh scale is used to grade the amount of damage to the villi in celiac disease. I think yours sounds like high level damage, probably a level 4 on the Marsh scale.

Isn't that encouraging? Ah well, we all start somewhere.

Healing is the first order of business for you, and that can take sometime. The more strictly gluten free you stay the faster you can heal. Also the sooner your intestines can start absorbing nutrients/vitamins/minerals that you may not be getting enough of right now. In the meantime it might help to take some extra vit D, B-12, calcium, etc. Just be sure your meds and vitamins are gluten free. Sub-lingual vitamins are good when you have damaged villi because they are absorbed in the mouth. You can get liquid B-12 for instance.

[gifree]

You can read about the digestive system on this link to Kimballs' Biology pages.

Open Original Shared Link

The Marsh scale is used to grade the amount of damage to the villi in celiac disease. I think yours sounds like high level damage, probably a level 4 on the Marsh scale.

Isn't that encouraging? Ah well, we all start somewhere.

Healing is the first order of business for you, and that can take sometime. The more strictly gluten free you stay the faster you can heal. Also the sooner your intestines can start absorbing nutrients/vitamins/minerals that you may not be getting enough of right now. In the meantime it might help to take some extra vit D, B-12, calcium, etc. Just be sure your meds and vitamins are gluten free. Sub-lingual vitamins are good when you have damaged villi because they are absorbed in the mouth. You can get liquid B-12 for instance.

Interesting. So, I'm curious, does a level 4 on the Marsh scale indicate anything other than a longer healing period? Do level 4s typically have irreversible damage or, regardless of level, are we all able to eventually make it back to a baseline, at varied schedules?

Also, I have had a # of blood panels conducted, and have read on the forum that B12 levels are very important. My two latest readings have been either high (1122) or upper level of the range (835). BTW: the range is 211 - 946. I'm curious though, with malabsorbtion, are there caveats to those #s...should I still take a sublingual?

Finally, I had the Antigliadin / Transglutiminase test conducted a while back and 3 out of the 4 tests were negative. However, the Antigliadin Abs, IgG (Deamindated Gliadin Abs, IgG) was particularly high (54), with anything greater than (30), an indication of Moderate to Strong Positive. Does this mean anything other than, 'yeah, you've got celiac disease and need to stick to a gluten free diet?'

I ask these questions, 'cause, as I mentioned in the opening thread, simply sticking to the gluten free diet has actually made me feel worse in many ways, with a few new symptoms, including what appears to be the beginnings of peripheral neuropathy. Oh Joy! Any suggestions on that one?

Thx

[VitaminDGirl]

Hi. I have my biopsy tomorrow to confirm (or not) celiac...

but wanted to say that getting my D up through a good D3 supplement in 5,000-10,000 ius helped my neuropathy type feelings IMMENSESLY. So it could be a seperate issue, that part. Hope that helps a bit.

[VitaminDGirl]

Hi. I have my biopsy tomorrow to confirm (or not) celiac...

but wanted to say that getting my D up through a good D3 supplement in 5,000-10,000 ius helped my neuropathy type feelings IMMENSESLY. So it could be a seperate issue, that part. Hope that helps a bit.

ps also my thyroid was in the 3. somethings (high for my dr's liking) and that looked a lot better after getting my D up.

Just thought I'd add that part in case it is helpful somehow to your case.

Not many drs are 'up' on D, so choose wisely.

I actually went to an MD that is not my family dr. for D testing and help as well as to get this celiac testing ordered.

[gifree]

ps also my thyroid was in the 3. somethings (high for my dr's liking) and that looked a lot better after getting my D up.

Just thought I'd add that part in case it is helpful somehow to your case.

Not many drs are 'up' on D, so choose wisely.

I actually went to an MD that is not my family dr. for D testing and help as well as to get this celiac testing ordered.

Thanks for the feedback. Actually, my Vitamin D level are low, so I'm taking a daily D3 (5000 IU), as well as a Calcium supplement with D3 (400 IU) and then a multivitamin w/ I think approximately 15% of the daily recommended allowance. So, all totaled, I'm getting 'D' up the wazoo. Hopefully it helps!