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How Long Did It Take Before You Saw Any Improvement?

Jen-1984

By Jen-1984
in Coping with Celiac Disease

Recommended Posts

Jen-1984 Apprentice
Jen-1984
Posted

I just found out yesterday that I have a dairy allergy and my allergist said with recent blood work that it looks like I also have celiac disease. I am just curious how long it has taken you with dual (or more) allergies and sensitivities to see improvement after you changed your diet?

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mushroom Proficient
mushroom
Posted

The post-gluten course is often a little unpredictable, since we are all so different. You may experience miraculous improvement right away. Certainly, if you are allergic to dairy and eliminate it you should notice a pretty immediate improvement. With celiac, it is less predictable. It depends on the amount of GI damage, it depends on your level of addiction to gluten and whether or not you go through a withdrawal period of two or three weeks. Certainly, you have a lot of healing to do, and it is not like turning off the faucet and everything is all better. Have you had testing done for nutrient deficiencies (vitamins, minerals, iron?) If you are low in things like Vit.D, B12, iron, you will need to rebuild your stores before you start feeling significantly better. Nevertheless, within the first couple of weeks you should notice that you are feeling a bit better but do not be upset if you are not because of the other factors.

You may find that your food is still not digesting properly because your pancreas needs to heal from the gluten too, and is not putting out enough enzymes, which you will then need to supplement. It also helps to restore the good flora in your gut by taking probiotics. In your case if you are allergic to dairy you will not be able to do yogurt so you will have to get dairy-free probiotics.

If you are lucky, your allergy testing will have picked up on just lactose intolerance (although I do think it is the protein casein they test for, come to think of it), but if you are only lactose intolerant you may be able to regain dairy at a later stage.

No need to go looking for problems that might or might not happen. If you find you are not improving, talk to us about them and we can give further advice. :)

Jen-1984 Apprentice
Jen-1984
Posted
  • Author

I have had vitamin levels checked recently and I had low potassium and also low vitamin D, but I only took over the counter potassium suppliments and the doc didnt think my vitamin D was too bad so he decided not to treat it. I have also had a mild case of pancreatitis in the past. I hope that I can improve more, I have seen some improvement since going gluten free but I could tell I was getting sick from eating cheese and butter. So when the doctor dx'ed me with a milk allergy I was not completely surprised if that makes any sense at all. I feel a little depressed about the milk thing though. My diet seems so restricted... :(

powerofpositivethinking Community Regular
powerofpositivethinking
Posted

I just found out yesterday that I have a dairy allergy and my allergist said with recent blood work that it looks like I also have celiac disease. I am just curious how long it has taken you with dual (or more) allergies and sensitivities to see improvement after you changed your diet?

just curious...did the allergist tell you it looks like you have celiac based on the DGP igG score alone or in combination with the potassium and vitamin D level? I've read a few of your other posts, and it seems we have a lot in common :) my thread and numbers are here http://www.celiac.co...ults-please/�� I only had a strong positive for the DGP IgG and nothing else.

the exercising and endurance post you made, I can completely relate!! I lost a lot of weight in 2010 doing Jillian Michaels videos and changing my eating habits. I've gained some of the weight back, but now doing any her workouts or most exercises in general makes me feel tired and worn out, instead of elevating my mood and making me feel good. Sure the weight gain is a small part, but I was able to do her videos and feel better when I was heavier than my current weight and get that mood lift before <_< I have my annual at the ob/gyn today, so I'm going to ask her to order some nutrient tests, so hopefully she will!

I'm happy that you're getting some answers!!

1desperateladysaved Proficient
1desperateladysaved
Posted

As I bumped along my first 7 months gluten free it has been hard to grasp "feeling better." As I look back though, I realize profound changes have come. I was challenged with months of withdrawl symptoms or problems with missing gluten or cross contamination. I also discovered other allergies. A month or so ago, a clear mind decided to live with me! At times I feel energetic.

I didn't just go gluten free and feel better. I keep working toward better health whereever it took me.

You are on the road, Keep walking,

It may take a while,

but headed in the right direction,

You'll get there.

Get Well,

Diana

Jen-1984 Apprentice
Jen-1984
Posted
  • Author

1desperateladysaved, I totally and completely can relate about the missing food or having issues with cross contamination. I feel like I am so dumb when it comes to hidden ingredients and I think I have poisoned myself without knowing a few times. I really do hope I am on the road to recovery, as I want to live as long as I can for my kids. Thank you for your advice, it makes me feel better having your advice.

Powerofpositivethinking, my allergist said that he thinks that I have celiac. I am still headed to the GI to possibly confirm it, but I will say that after cutting gluten out, I feel way better than I did while on it so I think no matter what is done or said there I am keeping myself off the gluten. I also think we have alot in common and I have read your other posts too! ;) About the endurance thing, I feel a little better after cutting out the gluten and I have been able to FINALLY clean my house without falling asleep afterward and I have been able to run my kids around town for Dr.'s appointments without crashing at night with major knee pain and a general feeling of unwell. You should get your vitamin levels checked. You might be like me and be able to suppliment with over the counter vitamins and do okay if you need them. One other thing is that I also noticed that I gained the most weight when my diet was rich in dairy and gluten type foods. I know you may not have a dairy allergy, but with the gluten, you maybe able to lose that weight when you cut it out (your still eating gluten for your endoscopy, right?). I also lost weight 2 years ago with exercise and was feeling great, but that was short lived as I think the celiac reared its ugly head and halted that. I gained 40 lbs back in 2 months. :( Since being off gluten for only a week, I have lost 4 lbs and I have been eating rice noodles with gluten-free seasonings and olive oil. I want to say that I believe that in my own mind that I am in the possible early stages of celiac disease and that it was a warning sign when I recieved the positive DGP IgG that I needed to go gluten free right away. I am not a Dr, this is my own guess.

This is why I am so grateful for this forum. I am scared, I feel depressed about all of this and my parents (even though I am 28 years old, I still listen to them) think its all just anxiety related and don't believe I have anyhting wrong with me, even after blood tests and a very obvious positive skin prick allergy test. I know I can come here and find answers to my questions. I can find better answers here than I can in all of the doctor's offices that I have been to. I have people I can relate to that are going through what I am and I have seasoned people that can chime in and help me with in depth issues. I am so grateful for this forum.

powerofpositivethinking Community Regular
powerofpositivethinking
Posted

I think it's funny you mentioned about your parents because I'm 27, but it still matters to me what they think too! Although weight wise I'm "healthier: according to my GP, it seems I can trace my problems back to when I lost weight in the first place. My mom thinks i'm being overly dramatic with my bowel issues, but I know what was normal before, and that's not what's happening now. I didn't even tell them I went to a GI. I'm waiting until my follow-up appointment on the 21st to tell them anything.

Luckily, I had my ob/gyn appointment today and requested for her to run the following tests, which I put together from forum posts on here. I was so happy she agreed, and she will be sending a report to my GI doctor, so we'll see what information comes back.

These were the tests requested:

Complete Metabolic Profile

Complete Blood Count

Vitamins A, B (B1, B2, B6, B12), D, E, K

Ferritin/iron

Magnesium

Folate

Potassium

Calcium

Zinc

Thyroid (TSH, Free T3 and Free T4)

Inflammation Markers CRP, SED and RF

It was quite the collection, but hopefully it will shed some more light on things!

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mushroom Proficient
mushroom
Posted

That's a great list. It's what we all should have but very few get. :)

KMMO320 Contributor
KMMO320
Posted

I just found out yesterday that I have a dairy allergy and my allergist said with recent blood work that it looks like I also have celiac disease. I am just curious how long it has taken you with dual (or more) allergies and sensitivities to see improvement after you changed your diet?

It took me about a week. I was having daily migraines and gastro distress. Within a few days it slowed down, by a week I was able to go shopping without having to make a run (literally) to the bathroom. Then again, they caught mine fairly early. there are some people who have had severe damage before they were diagnosed and it may have taken them longer to feel better.

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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