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I'm Not Getting Better, Actually Getting Worse

answerseeker

By answerseeker
in Coping with Celiac Disease

Recommended Posts

answerseeker Enthusiast
answerseeker
Posted

I was starting to feel a bit better at my 2 month mark but now I'm just going down hill. It's been 5 months now I mean I should feel a little something shouldn't I? I am now seeing a cardiologist and undergoing testing on my heart, I just got over kidney stones which caused a kidney infection, I am more exhausted than ever, and worse of all my weight is down to 101 lbs. I was 110 at diagnosis, I should be gaining slowly not losing. I'm 5' 3.5" my clothes barely fit! I still get gurgling every time I eat, no matter what I eat and loose stools a few times a week. Vitamin levels are good except still deficent in Vit D, docs say blood work is really good otherwise.

 

More doctor visits next week and more tests. I'm physically and emotionally drained and the medical bills are piling up :angry:

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GF Lover Rising Star
GF Lover
Posted

I was starting to feel a bit better at my 2 month mark but now I'm just going down hill. It's been 5 months now I mean I should feel a little something shouldn't I? I am now seeing a cardiologist and undergoing testing on my heart, I just got over kidney stones which caused a kidney infection, I am more exhausted than ever, and worse of all my weight is down to 101 lbs. I was 110 at diagnosis, I should be gaining slowly not losing. I'm 5' 3.5" my clothes barely fit! I still get gurgling every time I eat, no matter what I eat and loose stools a few times a week. Vitamin levels are good except still deficent in Vit D, docs say blood work is really good otherwise.

 

More doctor visits next week and more tests. I'm physically and emotionally drained and the medical bills are piling up :angry:

 

Sorry Hun.  I know you've been trying to heal a long time.  There must be something else going on.  You'll get through all the testing.  Rest when you can and eat simply.  Contact the Hospital, Clinic or where ever you're getting all this done and apply for Financial Assistance now.  You would be surprised what is available to people.  I applied when my cancer was found and they have paid over 100,000.00 dollars in hospital costs already and a good part of the physician's bills.  

 

Hang in there and keep us posted.

 

Colleen

nvsmom Community Regular
nvsmom
Posted

:( I'm sorry you are still feeling so poorly. 

 

My recovery pattern was similar to yours: I started feeling better after a few weeks gluten-free, felt quite well at 2 months gluten-free, and then went downhill from months 3-6 in my fatigue, hair loss, and arthritis (GI wasn't worse by much). After the 6th month I started to improve, and then once I finally had mythyroid treated with a med that worked for me, I actually felt good. This November, I took a small down turn but it wasn't nearly as extreme as the last one so I assume I am getting better still.

 

Healing can be annoyingly slow in some people; it can take years. It seems that among us who take a long while to heal, we often have other health issues (known or unknown causes) that could be slowing us down further. As you probably know, autoimmune disorders tend to run in groups; thyroiditis and diabetes are the most commonly found with celiac disease, but lupus, crohn's, colitis, and others can occur with celiac disease too.

 

Perhaps look into thyroiditis - that's a cheap one to check - and question him about other causes. It could still be celiac disease at this point though, even if you are 100% gluten-free, so you just may need more time. :(

 

Beat wishes.

answerseeker Enthusiast
answerseeker
Posted
  • Author

:( I'm sorry you are still feeling so poorly. 

 

My recovery pattern was similar to yours: I started feeling better after a few weeks gluten-free, felt quite well at 2 months gluten-free, and then went downhill from months 3-6 in my fatigue, hair loss, and arthritis (GI wasn't worse by much). After the 6th month I started to improve, and then once I finally had mythyroid treated with a med that worked for me, I actually felt good. This November, I took a small down turn but it wasn't nearly as extreme as the last one so I assume I am getting better still.

 

Healing can be annoyingly slow in some people; it can take years. It seems that among us who take a long while to heal, we often have other health issues (known or unknown causes) that could be slowing us down further. As you probably know, autoimmune disorders tend to run in groups; thyroiditis and diabetes are the most commonly found with celiac disease, but lupus, crohn's, colitis, and others can occur with celiac disease too.

 

Perhaps look into thyroiditis - that's a cheap one to check - and question him about other causes. It could still be celiac disease at this point though, even if you are 100% gluten-free, so you just may need more time. :(

 

Beat wishes.

I've had my thyrhoid checked about 6 times already because of the heart issue they immediately check that. I've also had parathyroid checked as well. Type 1 diabities runs in my family but they always check my glucose, maybe they need to do more testing there. My GP wants me to have a colonoscopy but I'd rather explore the least invasive ones first. At this point I'm not sure I could even tolerate the prep with my weight already down and feeling faint just standing up.

 

I'm getting my asthma checked on Monday and Wed I go to the cardiologist again for an echocardiogram and a holter monitor.

bartfull Rising Star
bartfull
Posted

Just a shot in the dark, but have you been to the Mast Cell Activation Syndrome thread?

1desperateladysaved Proficient
1desperateladysaved
Posted

Healing was not all uphill for me.  BUT just because you don't feel so well just now, doesn't mean you are not being delivered.  I would still see you as heading up the hill, even if you are currently walking through a dip!   I often experienced my highest highs just after my lowest lows.  Some of my answers were  complicated. Hang in there and keep walking through it.  Over time you can consider what all you need to do to recover and do it.

 

Do you share a kitchen?  Many of my early struggles seemed to be from CC.

 

D

eers03 Explorer
eers03
Posted

Create a goal weight and track your calories.  If at all possible, never miss that daily caloric intake goal.  Gaining some weight will make you feel better.  Its exactly what I had to do.  If you have an iPhone or iPad there are lots of apps that will help you do this.

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NoGlutenCooties Contributor
NoGlutenCooties
Posted

Are you sure that you're eating enough in terms of calories, nutrient-rich foods, and good fats?

anti-soprano Apprentice
anti-soprano
Posted

It took me a very long time to feel energy return as well.  Before going gluten free, even though I had so many chronic and annoying issues from the undiagnosed gut damage, I hadn't been sick in years.  Seriously- no common cold for about 3 years.  After going gluten free, I caught every thing that I came in contact with for about a year.  I took 4 rounds of antibiotics in a period of 3 months and lost about 10 lbs from a stomach bug that lasted a full week when everyone else recovered in a day or two.  So it was also difficult to tell how my energy was doing. Still at 17 months, I have not been able to return to high intensity yoga that I love so much.  However, I believe I have other problems on top of celiac.

 

I'm concerned about your weight.  I would think the body is going to have trouble healing if it has no stores to call on.  What are you eating??? Are there only certain foods that you can tolerate? Do you have other symptoms that linger besides what you have already shared?

 

I agree with Bart on the MCAS thread.  When searching for answers, leave no stone unturned.

 

Shellie

GottaSki Mentor
GottaSki
Posted

Hi Lori...I just answered on your other thread...didn't see that you are having trouble with many foods so that answer may not be helpful.  Have you been keeping a food/symptom log?  If you can't pinpoint what is bothering you...it may be time for a comprehensive elimination diet followed by trailing each individual food (not food groups) with at least three days between trials.

 

I know you are anxious to gain weight....but may be helpful to find the best foods for you first.

dilettantesteph Collaborator
dilettantesteph
Posted

I had problems with recovery too.  Initially I felt so much better just eliminating Cheerios and bread and I thought that all my problems were solved.  As time went on, I had to learn more about where gluten contamination was and eliminate more things.  Later I realized that I was sensitive to oats and oat contamination.  Eventually I learned that I was sensitive to lower levels than most and I do better on a diet containing very few processed goods.  The food/symptom journal mentioned above was very helpful.  Keep track of where a food comes from as well as what it is.  That way you can track intolerances and possible contamination at once.

 

I hope that your doctors are helpful and that you feel better soon.

answerseeker Enthusiast
answerseeker
Posted
  • Author

I had my cardiologist appointment today. I'm wearing a holter monitor but my blood pressure gets low while heart rate goes high upon standing. May have POTS but he doesn't want to say for sure until all testing is done. He also checked my magnesium levels.

With the tachycardia that could explain the weight loss. If my heart is pumping at 145bpm it will cause weight loss because I'm literally burning calories just standing up. Hopefully soon all the pieces of the puzzle will come together. My eosphonils are also very high at 10. Normal range is 0-5 so there is some immune response or inflammation going on.

answerseeker Enthusiast
answerseeker
Posted
  • Author

It took me a very long time to feel energy return as well. Before going gluten free, even though I had so many chronic and annoying issues from the undiagnosed gut damage, I hadn't been sick in years. Seriously- no common cold for about 3 years. After going gluten free, I caught every thing that I came in contact with for about a year. I took 4 rounds of antibiotics in a period of 3 months and lost about 10 lbs from a stomach bug that lasted a full week when everyone else recovered in a day or two. So it was also difficult to tell how my energy was doing. Still at 17 months, I have not been able to return to high intensity yoga that I love so much. However, I believe I have other problems on top of celiac.

I'm concerned about your weight. I would think the body is going to have trouble healing if it has no stores to call on. What are you eating??? Are there only certain foods that you can tolerate? Do you have other symptoms that linger besides what you have already shared?

I agree with Bart on the MCAS thread. When searching for answers, leave no stone unturned.

Shellie[/quote

It's funny because before diagnosis I never ate breakfast and I weighed more. Now I eat breakfast everyday, usually a bowl of rice chex but I do supplement with Ensure. I ate 3 pieces of gluten-free pizza today for lunch , and I'm going to have curry chicken and rice for dinner. I seem to eat a normal diet for the most part, I don't skip meals but the weight won't come up. We had a big steak dinner the other night with loaded baked potato and I didn't even gain a pound. If I go to In N Out burger I'll get a double double (protien style) and fries and eat the whole thing. If you look at me you think I don't eat but I do!

I tolerate most foods, I just get symptoms if I

have too much dairy. I get gurgling with the Ensure, soy maybe?, but I need it right now

Mac0030 Newbie
Mac0030
Posted

I understand this. It's been two months and I feel worse each day. I had no symptoms now its bloating, gurgling, loose stool and fatigue among other things. I go back to the doctor Thursday and hopeful to get some answers besides the "your body is healing" response. Stick with it and try not to get down. Sounds easy but I know it's not.

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    • trents
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      @Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked pointed out, absence of symptoms is not always a reliable indicator that no damage is being done to the body. I was one of those "silent" celiacs with no symptoms, or at least very minor symptoms, whose body was being slowly damaged for many years before the damage became pronounced enough to warrant investigation, leading to a diagnosis. By that time I had suffered significant bone demineralization and now I suffer with back and neck problems. Please, if you choose to continue consuming gluten, which I do not recommend, at least get tested regularly so that you won't get caught in the silent celiac trap down the road like I did. You really do not outgrow celiac disease. It is baked into the genes. Once the genes get triggered, as far as we know, they are turned on for good. Social rejection is something most celiacs struggle with. Being compliant with the gluten free diet places restrictions on what we can eat and where we can eat. Our friends usually try to work with us at first but then it gets to be a drag and we begin to get left out. We often lose some friends in the process but we also find out who really are our true friends. I think the hardest hits come at those times when friends spontaneously say, "Hey, let's go get some burgers and fries" and you know you can't safely do that. One way to cope in these situations is to have some ready made gluten-free meals packed in the fridge that you can take with you on the spot and still join them but eat safely. Most "real" friends will get used to this and so will you. Perhaps this little video will be helpful to you.  
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