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Recently Diagnosed, Looking For Hope/help

lesquee

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lesquee Newbie
lesquee
Posted

Hi everyone,

I just got my official diagnosis yesterday, but have been gluten-free for a week and a half. I was super miserable before I made the change- constant heartburn, bloating, sever anxiety and depression- and am now feeling more functional, but I'm still very worried and was hoping you could give some encouragement. I still feel heartburn and bloating soon after eating, and it usually lasts about 24 hours. I'm going through all kinds of scenarios of other mysterious things I could be missing (am I allergic to nut flours? Fructose malabsorption? Candida? SIBO? Parasites?). I've eliminated dairy since I have always had trouble with it anyway.

Basically my question is, is it normal to still feel like food isn't digesting properly? Should I keep wildly searching for other problems, or do I just need to be patient? I have this fear that things will never get better, and I desperately want my life back (physical activity, intimacy with my husband, no swings into depression).

Thanks,

Erin

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adab8ca Enthusiast
adab8ca
Posted

Hi

First, welcome! My GI told me that I should feel better within a few days. The dietician I saw said it would probably be a year before I started to feel better...I am just over one year in and it was definitely the latter part of that year that I started to feel better...One week is no time at all..Not to freak you out! Avoiding dairy is good but it is way too soon to worry about other intolerances. Take it one day at a time and be kind to yourself...

Ada

sa1937 Community Regular
sa1937
Posted

Welcome, Erin! I think you just need to be patient, difficult as it is when we want to feel well instantly. We didn't get this way overnight and it's going to take awhile to heal.

I think it's just too soon to assume you may be reacting to all those other things. It is good that you gave up dairy right away...you may be able to introduce it again later. That was harder for me than giving up gluten.

Our bodies are pretty wonky right away and it just takes time. Keep reading the forum and you'll find many of your questions are also questions others have. And feel free to ask any questions you may have.

sarahw Rookie
sarahw
Posted

Hi Erin,

We are in the same boat. I was diagnosed 6 weeks ago--i just joined this forum yesterday. It has been a difficult 6 weeks but I will say that I am VERY slowly feeling better every day. I think that it gets easier once you get a hang of the gluten free diet and I dont expect to have it mastered for many more months/year. The depression/anxiety is still terrible though. I want to be back to my old self too and feel sorry that I am so depressed/anxious around my husband and I have no energy for my 18-monht old daughter. I had a little bit of anxiety/depression before my diagnosis but it has gotten worse. I am taking some natural supplements/amino acids (GABA, Stabilium, and a supplement called Calmatrine) to help with that. I also went ahead and did the stool sample test by Enterolab to determine if I have any parasites etc and if I am also allergic to soy, dairy and eggs. I am willing to do whatever I have to to feel better so I wanted to know what else is going on so I can start feeling better. Are you taking sublingual B-12 supplements? That may help with your depression also. Other people say it will probably take at least a year to feel better so I am trying to be patient but it is difficult. Good luck to you

pricklypear1971 Community Regular
pricklypear1971
Posted

Try probiotics and digestive enzymes ( gluten free, of course!). I use pb8 (but I think it has milk), and Digest Gold (don't know about the milk).

Both help a lot in the beginning, especially.

AVR1962 Collaborator
AVR1962
Posted

Erin welcome. It does take awhile for the system to get back on track and most times alot of healing has to take place. You mentioned heartburn and that could mean that you had alot of acid in your stomach which does alot of damage. If that is still an issue you will need to take steps to protect your stomach. If not on meds, use Pepto before ou eat foods with an acid base, any caffeine or alcohol which are all hard on the stomach. Best actually to avoid these and go with low acid foods if you are having stomach issues.

You mnetioned that it sometimes feels like the food is having a hard time digesting, it just might be the case, I remember dealing with that. I had to cut back on my meat intake, eating on 4 ounces or less per serving. Protein is very important to the healing process but meats can be hard for the stomach to break down. Keep it simple, keep it whole foods, avoid the gluten-free products for now and there could be other things that you may find giving you issus but it's hard to say what unless you go to a simple diet. Cut out the foods with additives for right now if you can and start keeping a journal, this will help alot.

BabsV Enthusiast
BabsV
Posted

Hi, Erin. Welcome. I'm a relative newbie to all of this also -- today is the 3-month anniversary of my diagnosis.

I was having a lot of the same issues you were having after being gluten-free for almost 2 months...posted about it on the forums and several members posted really good tips. I've added in probiotics and digestive enzymes and that definitely helps. Also started keeping a much more detailed food diary so I could pinpoint what foods seemed to set off abdominal pain, etc. I'd already cut dairy out of my diet since it was causing problems but I also ended up cutting out most fruits, corn, nuts, raw vegetables and beans, basically anything that seemed to take an effort to digest. I've been sticking to rice, potatoes, small amounts of lean proteins (chicken and turkey mostly but did just try some pork tenderloin a couple of days ago and that went ok!), egg whites, cooked veg, bananas, etc. Not exactly an exciting diet but it has made a difference. I'm not eating any gluten-free replacement foods at this point; I'm sticking to simple whole foods. I'm also eating small meals more often...eating a 'normal' size meal seems to overwhelm my system at this point. It is rather a hassle at times since it seems like I am always thinking about food or eating but it really has made a difference.

I'm 3 months in and while I am definitely better than I was prior to diagnosis I am far from being in great shape. I figure I was sick for some time so it is going to take some time to get better. I have no patience so want to be better now but I'm learning I have to take it day-by-day and make the most of it. Some days are good days and some aren't so great but they're all better than what they were in July when I was so so ill.

Also, I have a history of reflux problems so my doctor has me on 20mg of Omeprazole two times a day. I can say that the days that my gut seems irritated the reflux symptoms appear. On the days my gut seems more settled I don't have the reflux problems. My doctor is hoping that once I'm healed the reflux issues will settle down. *fingers crossed*

Good luck and again welcome. The wealth of experience the members of these forums share is amazing and honestly, it has been more helpful to me on many occasions than dealing with my doctors!

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      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to see if they can get you the gluten-free version (they are tasty) > This past week I bought "Sliced Raw Almonds, Baking Nuts, 5 lbs Item 1495072 Best if used by Jun-10-26 W-261-6-L1A 12:47" at Costco. The package has the standard warning that it was made on machinery that <may> have processed wheat. Based on that alone, I would not eat these. However, I contacted customer service and asked them "are Costco's Sliced Almonds gluten free?" Within a day I got this response:  "This is [xyz] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response:  This item does not have a risk of cross contamination with gluten, barley or rye." Based on this, I will eat them. Based on experience, I believe they will be fine. Sometimes, for other products, the answer has been "they really do have cross-contamination risk" (eg, Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs Item 1195303). When they give me that answer I return them for cash. You might reasonably ask, "Why would Costco use that label if they actually are safe?" I can't speak for Costco but I've worked in Corporate America and I've seen this kind of thing first hand and up close. (1) This kind of regulatory label represents risk/cost to the company. What if they are mistaken? In one direction, the cost is loss of maybe 1% of sales (if celiacs don't buy when they would have). In the other direction, the risk is reputational damage and open-ended litigation (bad reviews and celiacs suing them). Expect them to play it safe. (2) There is a team tasked with getting each product out to market quickly and cheaply, and there is also a committee tasked with reviewing the packaging before it is released. If the team chooses the simplest, safest, pre-approved label, this becomes a quick check box. On the other hand, if they choose something else, it has to be carefully scrutinized through a long process. It's more efficient for the team to say there <could> be risk. (3) There is probably some plug and play in production. Some lots of the very same product could be made in a safe facility while others are made in an unsafe facility. Uniform packaging (saying there is risk) for all packages regardless of gluten risk is easier, cheaper, and safer (for Costco). Everything I wrote here is about my Costco experience, but the principles will be true at other vendors, particularly if they have extensive quality control infrastructure. The first hurdle of gluten-free diet is to remove/replace all the labeled gluten ingredients. The second, more difficult hurdle is to remove/replace all the hidden gluten. Each of us have to assess gray zones and make judgement calls knowing there is a penalty for being wrong. One penalty would be getting glutened but the other penalty could be eating an unnecessarily boring or malnourishing diet.
    • trents
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