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Newly Diagnoses/gluten Free/still Sick

Denise91860

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Denise91860 Newbie
Denise91860
Posted

I was diagnosed in July with Celiac Disease after spending the last 30 years with "irritable bowel" and most recently microscopic colitis. I was so relieved to finally get a diagnosis and was happy to give up gluten. I have completely removed all gluten from my diet. Unfortunately, I am still getting sick!! I generally make food at home as I have been unable to eat in most restaurants even one that boasts a gluten free menu. This week immediately after eating at least once a day I am stricken with gastro intestinal issues (severe diarhhea) followed by almost delibitating fatigue and joint pain. I have also had a significant weight gain (especially in the stomach). I have spent the last two months reading everything I can and it seems most find instant relief once the gluten is removed. I have not had that experience. Can anyone shed any light on why I'm still having such difficulties??

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kwylee Apprentice
kwylee
Posted

My relief wasn't immediate but it did come. I went through a period of withdrawal at first. I think it took a few months to really start feeling great, but that was only after I also eliminated dairy and soy. Many have the same intolerance to those two additional items - at least at first, or even other food groups such as nightshade vegetables, etc. If you relay your symptoms, I'm sure there are many here who can help with suggestions. Hang in there!

eatmeat4good Enthusiast
eatmeat4good
Posted

A lot of people didn't get relief for many weeks...and sometimes many months. While it would be nice if it was instant relief for everyone, that is not always the case.

ARe you eating dairy? It can have the same effect as gluten for some people. The villi that produce the enzyme to digest dairy are often absent or damaged in Celiacs. I didn't want to give up dairy and I didn't but several months later found that yes, I am sensitive to all dairy too.

It takes time. The secondary sensitivities are hard to figure out. Due to leaky gut syndrome we can be sensitive to many foods for a long time. Once everything heals though, you may be able to add some foods back. Stay the course...and get rid of dairy and soy if you haven't already. That helped a great deal.

JoshB Apprentice
JoshB
Posted

It can take time. If after several months you don't think you're making progress, then make an appointment with a gastroenterologist. It's possible that you may need steroids to start healing.

dilettantesteph Collaborator
dilettantesteph
Posted

You might want to try cutting out grains and processed foods. It sounds like you might be a super sensitive celiac. Have you checked toiletries and medications? You can try adding things back in after you heal.

Sammyj Apprentice
Sammyj
Posted

Check side effects of ALL your medicine. I had been gluten free for 10 weeks, and then found a medicine causing gastric problems (Metformin)

Denise91860 Newbie
Denise91860
Posted
  • Author

Thank you for your responses. I have been sick every day this week. I honestly feel like I should just stop eating . . .period!! It's so disheartening. From all the reading I have been doing, I suppose I should give up dairy. The only dairy I eat is in the morning which is an ounce of fresh mozzarella on my egg whites. Also, I have been having great issue with my usual salad at lunch even though I am very careful as to the dressing I put on it; either gluten free or I make it myself. I also feel like I should not eat food prepared anywhere but my own kitchen as every time I buy something naturally gluten free out I still get sick!! It's all very depressing to me. Also, I begin switching my shampoo, soap etc. but it is soooo expensive for a very small amount. I love Desert Essence but at $8.99 for a very small tube. . .does anyone have anything they use that is cheaper??

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T.H. Community Regular
T.H.
Posted

re: shampoo - all the ones I've found are about the same price, sadly. :-( I use Shikai, right now.

re: getting sick everyday. That sounds really similar to what I went through. By day 2 of the gluten-free diet, I was feeling worse than I had on gluten in the first place. Gastro issues, fatigue and joint pain, dizziness. Ugh.

Here's what it was for me:

1. Turns out that I have a few (previously unknown) foods allergies and food sensitivities. I don't get hives from these at all. The sensitivities don't even test. But when I eat them, I feel terrible. I get the big D, feel like I have the flu, just general awfulness. When I avoid them, that feeling goes away. I ended up dropping my foods to whole foods (veggies and eventually a meat, for a while), and keeping a food journal to track how I felt. This helped a LOT.

Having a more intense reaction to foods that may have been a mild, unknown problem before is not uncommon for people after they go gluten free. Dairy is the most common, and soy, nightshades, and corn issues also seem to be problematic for many. Corn - if you end up suspecting this is an issue, I would highly recommend checking out a corn allergen website, because this stuff if very hard to avoid, it can be in everything from iodized salt to canned veggies.

Oh, also? Some celiacs are oat sensitive, even to gluten-free oats, so if you have any gluten-free oats in your diet, that can be an issue. Since these are not prohibited in most gluten-free foods, some gluten-free products will contain these as well.

2. I also turned out to be more sensitive to gluten than what is usually allowed in gluten free products, so a lot of the gluten free products I tried at first were making me sick. Also, a couple of my allergens are more often used in gluten-free products, so I was getting more of them than I usually would.

Another thing that might be of use is to check out 'gluten withdrawal.' I didn't have that, I don't believe, but it can make you feel very crummy, from all I hear. A number of people here have experienced it.

Kim69 Apprentice
Kim69
Posted

OMG. That was (is?) so me! I see a therapist who specializes in working with people who have food related diseases. At one stage I was afraid of food. I actually bought food powder so I could have a liquid diet! My therapist talked me out of that.

I am 20 months post gluten-free. For me my worst abdominal pains and gas disappeared when I was treated recently by a naturopath for blastocystis parasite with flagyl. Oh what sweet relief!!

In the past two months I have developed bilateral leg and arm pain. I was already dx with fibromyalgia ( about a week or two before the aches started). My dr told me yesterday that I am positive for flu a and b so I either had or am about to have the flu! I admit i have sinus infection and am booked for surgery on sept 28 but I am sure I would have noticed having the flu!! My aches have lasted months now

- the flu only lasts 2 weeks. So confused!

I also have diarrhea but not really bad - about 4 times a day. I had a follow up gastroscopy and I am all healed :)

I am really interested to read that these aches and fatigue may be caused by food. I am quite sick and tired of food - I must admit. I am seeing my therapist today thank goodness. It looks like I might have to reconsider food as the culprit.

Oh - I get lots of muscle spasms. Does anyone else get this in conjunction with constant fatigue and joint muscle aches? I have my normal below normal temperature.

Denise91860 Newbie
Denise91860
Posted
  • Author

I get plenty of muscle spasms and suffer from constant fatigue. It's all just so depressing. I am going to give up dairy also and will not be eating in restaurants for awhile. Thanks for all your responses.

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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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