Newly gluten-free And Already Discouraged

[secondTUEsday]

Hi everyone,

I have not been officially diagnosed with Celiac but have two sisters and two first cousins that have been. As with what seems to be a common thread, looking back at all of the strange health issues I have experienced can all be explained by Celiac. After a sudden very painful bout with Gastritis that felt like a bleeding ulcer and landed me in the ER, I began examining what lifestyle changes could help with this and decided to try gluten-free for a few months to see how I feel. 

 

I have been gluten-free for about a week, and while I understand that it does take time to feel better, I am already feeling discouraged. I felt fine for a few days after starting the new lifestyle but since then have had several rough days. My symptoms with the Gastritis and with what I am feeling now are lower back pain, abdominal pain but no D or V (though some C), and generally feeling completely run down and miserable. The past several days I have noticed that when I do eat something it helps the stomach pain, until today where it seems like no matter what I eat my stomach is hurting. It has turned into a frustrating cycle of not eating makes my stomach hurt which makes me not want to eat, and then I have no energy to do anything at all. 

 

I have lost about 10 pounds in the last week, and while I had 10 pounds to lose I don't think it is healthy to be lacking in nutrition nor to lose weight so quickly. Does anybody have any suggestions on "soothing" foods that can also help me to get some nutrients? Any other advice that may not be related is welcome! My sisters have had different symptoms than me and have been gluten-free for years so they can't remember exactly how they felt in the beginning. 

 

Thank you  

[w8in4dave]

I do know it takes time to heal. Are you sure you are 100% gluten free? I thought I was also, but I found out I really wasn't, which can cause problems!! Or maby it isn't Celiac at all!! Maby you have something eles!! If your in such pain maby you should go to your dr. And  make him find out what is wrong with you!! I hope you find out soon!! I hate being n pain all the time!! Just hate it!! Good luck to you!! And please let us know!! 

[djs89]

  On 6/22/2013 at 2:48 AM, secondTUEsday said:

I have lost about 10 pounds in the last week, and while I had 10 pounds to lose I don't think it is healthy to be lacking in nutrition nor to lose weight so quickly. Does anybody have any suggestions on "soothing" foods that can also help me to get some nutrients?

 

I generally feel better when I eat foods such as buckwheat, quinoa, eggs (eggs have nutrients, though I am not sure if everyone can tolerate them), lentils, basic soups, and all vegetables/fruits. I try to eat very basic food that doesn't have many ingredients. There is a buckwheat food that can be bought in a box in most supermarkets called Kasha, and you can simply pour hot water over it and eat it, very easy to make. It tastes kind of like oatmeal. You can add something like honey to it for flavor. I like to combine buckwheat or quinoa with eggs, spinach/kale and honey. Smoothies with vegetables/fruit/water are an easy way to get nutrients, if you have a blender. Vegetable stir fry is another idea. Everyone reacts to foods differently, so it will take experimenting to find out what you can tolerate until you begin to feel better. I've read that pure peppermints (with peppermint oil) or peppermint/spearmint tea helps some people with gastrointestinal problems.

[Adalaide]

It is entirely possible that your weight loss could have been water weight from bloating or retention. This wouldn't be at all unusual. Some of the things to be checking on are sources of hidden gluten and cross contamination. The newbie thread can help with that sort of thing. https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

It is also normal to have ups and downs when starting a gluten free diet. You'll have times you aren't sure what happened, if you ate something wrong, or what is going on with you and all of this is normal. Your body is trying to make sense of what is happening and for the first time is able to begin healing. As for the stomach pain, I have this constant gnawing pain if I get contaminated that lasts a few weeks. For me what helps is grazing on small things constantly, never eating even so much as a normal sized meal but never letting my stomach be empty. I also drink ginger ale with bitters, and peppermint teas. There are some things really easy on the stomach like bananas, rice, applesauce, these can help when you can't find anything else palatable.

 

It also isn't too late to be tested if you aren't sure right now if you can stick through this without doing so. Better to do it now than to find out in a weeks or months that you you wish you had. Just something to consider. If you don't think you want to pursue testing, then don't, it is merely a suggestion.

[secondTUEsday]

Thank you so much for your quick replies! I think the bloating/water retention is a very real possibility, because several weeks ago I was extremely bloated and am feeling quite a bit better in regard to that..

 

Thank you for the kind words of encouragement and for the ideas to help me get past this! I read somewhere that the journey, especially at the beginning, is kind of a one step forward/two steps back deal. Hoping for a step forward tomorrow  

[Coeliacblog]

Firstly I would say that you need to see your Doctor and ask for a blood test for Celiac Disease. Your family link to Celiac means there is a high possibility that you also have the disease but you could equally have IBS or A.Another. Best to go and see the doctor to be sure. I found that once I knew what I was dealing with things became easier.

 

In the mean time djs89 above has suggested Peppermint Tea which is great, but personally my stomach settles better with Fennel Tea (could not live without it).

 

Good Luck

[notme]

  On 6/22/2013 at 5:05 AM, secondTUEsday said:

 I read somewhere that the journey, especially at the beginning, is kind of a one step forward/two steps back deal. Hoping for a step forward tomorrow

it is *exactly* like that in the beginning.   i think i lived on turkey sandwiches (on gluten-free bread) for, like, a month - hang in there  

 

that being said, have you been checked to rule out other causes for your symptoms?  you don't want to miss something else, although celiac is to blame for numerous problems if that is what is wrong.  dumb gluten!  

[1desperateladysaved]

It is okay to start out discouraged.  Realize that you are moving in a direction that will take you out of it!

 

After 30+ years of Celiac symptoms undiagnosed and upon going gluten free,  I had about 4 days of blissful feeling good.  After those days, I started to react to cross contamination, or had withdrawal symptoms.  Mine lasted months.  I had many other issues with food intolerances, so it would be difficult to determine when my symptoms from celiac intolerance improved.  I can tell you that after a year gluten free that I am feeling better.

 

D

[caro7]

  On 6/22/2013 at 9:46 PM, 1desperateladysaved said:

It is okay to start out discouraged.  Realize that you are moving in a direction that will take you out of it!

 

After 30+ years of Celiac symptoms undiagnosed and upon going gluten free,  I had about 4 days of blissful feeling good.  After those days, I started to react to cross contamination, or had withdrawal symptoms.  Mine lasted months.  I had many other issues with food intolerances, so it would be difficult to determine when my symptoms from celiac intolerance improved.  I can tell you that after a year gluten free that I am feeling better.

 

D

I am just starting the diet, after beeing sick for the last few years and finally finding a Dr. that worked with me to find the problem.( Celiac )  I was pleased to at last have a diagnosis.  I am struggling to find gluten free foods, (without spending a fortune),  My stomach has been off the last few day's so I hope I am not reacting to cross contamination.  Can anybody tell me what the withdrawal symptons are?  Thanks

[cyclinglady]

  On 6/27/2013 at 12:40 PM, caro7 said:

I am just starting the diet, after beeing sick for the last few years and finally finding a Dr. that worked with me to find the problem.( Celiac )  I was pleased to at last have a diagnosis.  I am struggling to find gluten free foods, (without spending a fortune),  My stomach has been off the last few day's so I hope I am not reacting to cross contamination.  Can anybody tell me what the withdrawal symptons are?  Thanks

I did not experience any withdrawal symptoms, but it did take me about 6 to 8 weeks to finally start to feel better.  I had very few symptoms prior to getting tested as I was just anemic.  Between my blood test and biopsy (seven weeks), I ate wheat like crazy as I was pretty sure the biopsy was going to show damage and confirm celiac disease.  By the time of my endoscopy I had intestinal issues.  Mostly bloating and the feeling like a rock was in my stomach.  I'd have good and bad days of feeling bloating, etc. once I started the gluten-free diet but by the end of the 8 weeks, I really started to feel better.  Now, I'm struggling with the anemia and an unstable thyroid, both of which are causing a lot of fatigue.  

 

gluten-free foods should not be very expensive.  I use mostly whole foods and purchase gluten-free flours in bulk to bake with (sales) so that keeps the cost down.  I rarely buy or make pasta (I'm allergic to garlic) and the processed foods that I do buy are typically potato or corn chips.  I do indulge in soy products:  yogurt, "ice cream" and milk since I'm also allergic to milk.  

 

My biggest concern now is just trying to eat out which is not frequent.  

 

Check out the newbie site for tips and suggestions:

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

Hang in there and welcome to the forum!  

[Mr. GF in Indiana]

The advice above is excellent.  I will add this only:  Dr. Fasano in 2003, found that the title "celiac" as a diagnosis, fit only one person in one thousand.  He found chemical evidence of celiac but without damage ascertainable, in about one in a hundred Americans (recognizing the many problems in making such guesstimates).  Open Original Shared Link  Open Original Shared Link but it would appear that, based on his study of relatives, that you have a 94/100 likelihood of NOT having celiac disease.  It is also highly likely that if you do have celiac disease, that you may have other food centered issues.  We get these food problems because plants have many defenses to discourage being eaten, and our immune systems often go overboard in attacking foreign food proteins.  You may be sensitive to gluten even so; you may have trouble with corn, sorghum, oatmeal, milk, eggs, and other allergens.   So please don't give up on yourself; we have the internet and it is a great help.  Medical articles are summarized on pubmed.com, and using lists of symptoms and outcomes on such things as rightdiagnosis.com, you may find you can assist your doctors in finding what is wrong.   University of Chicago celiac clinic web site, and my wide readings on food sensitivity on the internet, have shown me that 85% or more of those who improve their health due to diagnosing food sensitivity, figure it out on their own. 

 

The discouraging thing is that 60% of those with food sensitivity, even proven sensitivity, will continue to eat what they know makes them ill, so you have to dedicate yourself to finding answers and then sticking with those answers.   Just to make it more difficult, keep in mind that there are many proteins in our foods, and that we do not know what most of those do or how they may be bad for us in some way.   (We do know, clearly, that being fat or obese or eating junk and sugar is bad for us, yet most adult Americans do next to nothing to exercise or lose the weight...as an example).

 

Also, you do not say how you know you have four relatives with celiac; many diagnoses of celiac are now being done by "doctors" who in fact, are not medical doctors but are chiropractors, naturopaths, osteopaths and even MD;s who do not do the test right...or do no testing at all...so lots of people who think they are celiac, well, they aren't (meaning they need to keep looking for what's wrong, if it can be found).

[kareng]

  On 6/27/2013 at 4:11 PM, Mr. GF in Indiana said:

The advice above is excellent.  I will add this only:  Dr. Fasano in 2003, found that the title "celiac" as a diagnosis, fit only one person in one thousand.  He found chemical evidence of celiac but without damage ascertainable, in about one in a hundred Americans (recognizing the many problems in making such guesstimates).  Open Original Shared Link  Open Original Shared Link but it would appear that, based on his study of relatives, that you have a 94/100 likelihood of NOT having celiac disease. 

 

T

).

 

Not sure how you are getting that.  From your 2 references:

 

 

The prevalence of celiac disease in the general population is between 0.3% and 1%.”

 

“The overall prevalence of celiac disease in not-at-risk groups was 1:133”

[1desperateladysaved]

My withdrawal symptoms included mostly: 

 

Fogginess

Fatigue

bloating

 

The same as my symptoms when I ate gluten.  If anything it seemed more intense in withdrawal.  Since, I had similar symptoms, it got so confusing.

[seraphim]

I will say this....I thought I was gluten free completely the first two months. Heh.....Heh no. I was MOSTLY gluten free. But can only see it in hindsight now.